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Jono Lancaster: So What if My Baby is Born Like Me?

So What if My Baby is Born Like Me? (Jono Lancaster and his girlfriend Laura)

Jono Lancaster and his girlfriend Laura

Wow - where do I start? This is all still a bit crazy. A year ago I was a man with the dream to raise awareness for my condition, Treacher Collins Syndrome. Now we're onto the second documentary So What if My Baby is Born Like Me? and the first one, Love Me Love My Face has been shown literally all over the world: France, Italy, Australia, New Zealand, Japan. I would love to see the Japanese dubbed version. Wow! As I write this I have a huge smile on my face.

I was so nervous about the first documentary coming out. It was such an emotional time in my life but the BBC and the guys from the production company did a brilliant job with it, and the reaction from the world has been overwhelming. People have shared their stories with me, told me secrets and wanted to say hello. It's been brilliant and I can't thank you all enough.

Yeah, there has been some negative stuff - unfortunately that's life. There's been people pretending to be family, making jokes about me on websites, even people messaging me on Facebook saying nasty stuff, even questioning why Laura is with me - but this just makes me more determined to continue what I'm doing.

A quick catch up: me and Laura are still going strong, she's getting better around the house, ha ha!
So What if My Baby is Born Like Me? (Jono Lancaster with model baby)

Little Ellie (who featured in Love Me Love My Face) has started school. Her first year's been a tough one and she's got her first operations in June, so I've decided to try and raise money for a trip to Disneyland for her. I'll be going through a week of pain for her - ha ha! Bring on those fears; I'm thinking of starting with a triathlon, back, crack and sack wax, bungee jump, sky dive, getting my nipples pierced, eating a meal of grubs and nasties. Then maybe lying in a bath of spiders...

Oh and I am getting a little better at those school talks - I haven't dropped my hearing aid since the first one. I've loved doing these - talking to the kids about my experiences of life, letting them ask questions. I love it and I've even done a few colleges too.

BBC Three asked if I was interested in doing So What if My Baby is Born Like Me? as it was something close to my heart. Something I was about to face and try and get my head around. And with the relationship I had with the guys at the production company, I jumped at the chance.

Again it's been emotional, but a journey that's been so very rewarding I've learnt lots. I'll never forget it and it's helped me loads. I think the most useful thing I've learnt is that what's right for one may not right for another. I feel so honoured to have met so many cool people - and the fact that they've shared bits of their lives with me means so much to me.

So What if My Baby is Born Like Me (Jono Lancaster with Ashley)

Jono Lancaster with Ashley, aged 10, who also has Treacher Collins syndrome, which affects the way their facial bones developed

Hmm - how do I end this? I hope this isn't the end but the start of an amazing period in my life....

Please add your comment to this blog if you want to share or ask me anything.

You can watch Jono in So What If My Baby is Born Like Me? tomorrow night at 9pm.

So What if My Baby is Born Like Me? is part of the Bringing Up Britain season.

Add your comment.


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  • Comment number 1.

    Just have to say how brilliant I think you are for doing what you're doing. I watched the first program you did a long while ago, in fact, I think I watched it more than once. And then not long ago I spotted my parents and sister watching it as well. We've all said how inspiring your determination is.
    I will be sat watching 'So What If My Baby is Born Like Me?' tomorrow, not doubt about it.

  • Comment number 2.

    awww thanks for your kind words, very much appreciated.
    youl have to let me know wat ya think after tuesdays is aired...

  • Comment number 3.

    The amount of effort, and hard work you've put into raising awareness is truly inspiring. I will also definitely be watching 'So What If My Baby is Born Like Me?' tomorrow!

    Also I wish you the best of luck in raising money for Little Ellie, make sure to keep us updated :)

  • Comment number 4.

    I think this world needs more people like you,you really are a good egg.Will be watching the next show.Best wishes to you both and carry on the amazing work.x

  • Comment number 5.

    Just want to say how amazing you are, and how brave you are.

    My son was born with hemophilia although none of my relatives have. Normally people don't see my kid has it. But, when he was on a wheelchair, everybody stared my son. You know, 'just on a wheelchair'...

    I was very inspired by your attitude. I don't know what I can do, but I'll do something to raise awareness like you.

  • Comment number 6.

    Hi Jono, you and Laura are truly inspirational. All the best for the future x

  • Comment number 7.

    what an amazing young couple, how sad that people have to resort to judging then and questioning why they're together. Keep your heads high guys, the treacher collins isn't who you are Jono, and shame on the idiots, hard hearted enough to even think, much less write things about you both! My heart goes out to you both with the decisions you're facing re a baby, I hope things work out for you x

  • Comment number 8.

    i think you and your girlfreind are amazing ..i think that it would be a lot easier for people if children were learnt about it while they are in primary ..i have epilepsy and i know its not the same i found out i had it when i was ten because i had a seizure in infront of the class and because non of the teachers explained about it i got teased intill i was in yr nine and i took it upon my self to do an assembly to explain what i had and all the children understood i think if alot of school did this children wouldent be scared to ask about it and wouldnt grow up to be so niave i think that you two are amazing and that you should keep on going strong the way you are because you are giving alot of children hope

  • Comment number 9.

    Just watching the programme on bbc3 and just want to say i think you are a lovely looking guy and it is totally obvious what laura sees in you! Please continue to ignore morons, unfortunately there are a few about. My 25year old son is on the autistic spectrum and has put up with a lot of sly remarks and bullying over the years for the crime of being himself but i keep telling him there are so many nice and understanding people out there. Wishing you and laura all the very best for the future

  • Comment number 10.

    I think all the negative comments on the site Jono mentioned are the disabled people in this world and they don't deserve any love. I think he is a strong person and he's found love. I hope the people who say they shouldn't be together don't find love and happiness. The best of luck to you both and enjoy yourselves.

  • Comment number 11.

    What a great bloke you are Jono. I've watched your TV series and you truly are one of the nicest guys. How some people can bully makes me very annoyed. Just keep doing what your doing. Keep being yourself buddy and I'm sure you will have a very happy future =D

  • Comment number 12.


    I have seen a few programs with you and your partner, you come across as an articulate and happy couple, I wish you well with all your endeavours.

    I understand social networking sites can be good, but some people are jealous and narrow minded.

    All the best to both of you

  • Comment number 13.

    I just wanted to say how brave you both are. This is the first time I've seen any of your programmes and I admire your outlook on life. I wish you both the very best on your journey in life.

  • Comment number 14.

    Jono, your an inspiration to me and to all! Dont listen to all these idiots dissing you, its only envy on there side, envious that you have a wonderful life and a gorgeous missus who looks at you with all the love she has! I wish you both the best of luck conceiving a child and, whatever happens, you'll be an awesome dad and laura an awesome mum. Though life is scary and people are bullies, together you can get through anything!

  • Comment number 15.

    Hi! I am just watching the baby program and I just want to say how amazing you guys are and how well you are doing at trying to rid of ignorance (although some people are rude and hopefully are ignored) Good luck with everything you are doing!

  • Comment number 16.

    I'm currently 19, I have no one in my family or myself that has any genetic disorders but watching your programs I do feel like I relate to you and what you are going through, you tell your story very well. You make me feel liberated how strong you are and your morals. There are some nasty people in the world, bitter and angry but you stand with your head held high setting an example we should all follow. What ever decision you and your girlfriend come to, it will be the right one as everyone can see you'll support that baby wether its adopted or not, genetic disorder or not. Wishing you both the best of luck, your an inspriation!

  • Comment number 17.

    I think you and your partner are very brave. Thank you for sharing your journey. Good Luck

  • Comment number 18.

    @jono @laura, I'm just a regular joe bloggs totally moved by your quest. In an ideal world people like you would be the first in line to have children. I don't know how this programme is going to pan out but I really wish you both all the luck in the world. You come across as good people who make the world a better place for everyone connected with your lives!

  • Comment number 19.

    Dear Jono,
    I am watching your documentary and am wowed by what an amazing person you are. As a teacher I think it is fantastic that you are going in to schools and talking to children raising awareness in genetic disorders and being such a positive role-model for children like Ashley and his peers. It must help a great deal having someone offer understanding AND practical advice. Please take the positive comments from people and ignore the nasty ones.
    I think that you and Laura will make absolutely wonderful parents. I wish you the very best of luck for the future.

  • Comment number 20.

    Jono Lancaster is an inspiration to many, he's a credit to everyone and is very brave, well done Jono, keep the good work up

  • Comment number 21.

    Good luck to you both and the other wonderful people also shown on the show - you are all inspirational and I wish you strength and happiness. You (and especially the children) define true bravery in my eyes.

  • Comment number 22.

    What an inspirational programme! I wish Jono and Laura all the love and luck in the comes from within and you have it in buckets!

  • Comment number 23.

    You are both amazing and we wish you the best of luck in the future. Take no notice of the few idiots out there who make stupid comments, you have each other and you should be proud of the example you are setting.

  • Comment number 24.

    Hi Jono & Laura i've just watched your bbc three programme 'So what if my baby's born like me'? i think you two as couple are brilliant, i'm glad you weighed up all the options available and have come to a decision as a couple i wish you two happiness and a child in the near future. I gnore all those comments on the internet they are just sad idiots who obviously have nothing better to do. I hope Ivf works for you and i hope you'll make another documentry when your Laura finds out she is pregnant. Kerry x

  • Comment number 25.

    Hi there Jono! Having just watched your latest documentary, I'd just like to wish you and Laura all the very best in your journey to become parents. You are both clearly lovely people and will make fantastic parents! Love Amy x

  • Comment number 26.

    Watching tonight's programme restores my faith in the human race. You are an admirable and inspiring couple who are a wonderful example to us all. I wish you the very best of luck with whatever decision you make - your child will be lucky to have you as parents

  • Comment number 27.

    Hi Jono I had a child with genetic disorders and sadly she passed away she had Mulieybr it stands for MU=muscle LI=liver EY=eye and BR=brain witch in shoter terms my Daughter was born with all her organs deformed. That is why I think you choseing the IVF is probley the best thing for you to do. Luckly I have not got 3 healty problems. I wish you both the best of luck for the futer

  • Comment number 28.

    Jono I think you and your girlfriend are lovely people and are truly inspirational for anybody having difficulties in their lives. I wish you all the very best and I hope you get everything you wish for yourself. I hope we get updates about your lives, I woul like to know how you both get on.

  • Comment number 29.

    Jono and Laura - you are truly amazing, and I feel privileged to have been allowed a peek into your lives. The sad idiots who are negative towards you will never truly understand the meaning of happiness, and are destined for a shallow, uninteresting existence. I can't help thinking how they'd react if they had children with conditions similar to yours? Hmmm...
    I really, really wish you and all the lovely kids (I hope) that you'll have, the best of life and all it has to offer.
    You're inspirational.

  • Comment number 30.

    You truly are an inspirational person and what amazing parents you guys will be, and what a role model you will be for your son or daughter.
    There are so many things I want to say but I think there will be enough room on here so good luck for the future and keep on doing what your doing xx

  • Comment number 31.

    I have to say that you are both amazing people, whatever you choose to do is personal to you but i can see that you will be incredible parents and will give the baby all the love and affection it needs.

    wishing you health and happiness for the future xx

  • Comment number 32.

    Just wanted to say what a great programme that was to watch. In July last year we had a son that shortly after was born was diagnosed with down syndrome, and although I wouldn't change him for the world now at first it was a shock for me and my partner he's fab. We are now expecting our second child and had to go through various tests to see if this child would be the same, but things are looking great and we have a 1:9000 chance to have another baby with down syndrome. So having gone through all this last week I just found your programme so great to watch and you truly are inspirational so is Laura wishing you the best of luck in the future.

  • Comment number 33.

    Hi Jono,
    I think you are sooo brave and inspiring!! I think whatever you choose to do is your decision and you have shown that you have put an awful lot of consideration into it.
    Best wishes to you both for the future :)

  • Comment number 34.

    Jonno I think your really cool. hope you have a lot of luck with your child. Laura is lucky to have a boyfriend like you. you are like one of my heroes.

  • Comment number 35.

    Hi I just watched your program, it gave me an insight into a very difficult subject Thank you.I think you are an amazing couple and will make wonderful parents.

  • Comment number 36.

    Hi Jono. Just saw you again on BBC 3. I saw the first programme and thought you were brilliant, especially with the kids at school . You are the most beautiful, kind and inspirational person and the world is a better place with you in it. Very best wishes to you and Laura in your life together and wishing you every happiness for the future.

  • Comment number 37.

    Hi Jono, i've just finished watching "So what if my baby is born like me?" and HAD to write on here. Firstly I was absolutely horrified that someone would message you to tell you that you are ugly - i'm sure I don't have to tell you that he and all of those awful people on that site are, by far the ugliest people ever!! I cried for you over your agony in regards to your morals but don't allow anyone to judge whatever decision you and Laura make - it is your decision alone. Finally, I want to wish you the very best of luck whatever you decide, i'll be watching any future programmes you do. YOU ARE A TRULY BEAUTIFUL PERSON JONO - AND YOU AND LAURA MAKE A TRULY BEAUTIFUL COUPLE. xx

  • Comment number 38.

    Hi Jono,
    I just watched your program and just wanted to say what an inspiration you are. You are such a brave, kind and thoughtful person and whatever decision you and Laura come to will be the right one for you which is all that matters. For what its worth I dont think you would be disrespecting anyone by having IVF selection as you have thought about the issue so carefully and you are are putting the welfare of your future child at the centre of your decision. Thank you for sharing your story and giving us all hope. I wish you all the luck in the world and look forward to your next programme x

  • Comment number 39.

    I wanted to say I completely understand why you feel you're disrespecting people who already exist with genetic conditions and how that's an emotional issue for you. I have a rare genetic disorder and have three children. I was offered a termination - I didn't ask for it! - with my third baby and I felt appalled, as if I was denying my own right to be here. I went on to have Alex and she is of course amazing, has a degree and a job and a boyfriend. Your misgivings are valid, but you're wrestling with an ethical dilemma, and life isn't based on a series of principles. You need to think about what you and especially Laura, who hasn't got anything emotionally invested in your condition, can cope with in the worst incidence. But thank you for having the sensitivity to care. Good luck. Karen

  • Comment number 40.

    Having just watched your programme 'what if my baby is born like me' and having worked with children with disabilities and their families for many years I know how hard it can be and I also know how rewarding it can be. You and Laura are an inspiration to us all you have overcome so much and are now looking forward to a good live together. I hope that all your dreams come true no matter how you achieve them. Your Mum is also a wonderful person - she is so full of love and common sense. Have a great life, hold your head up high and look the world in the face and ignore the bullies.

  • Comment number 41.

    You two are great! I can understand the dilemma you have about screening.There seems no doubt that you two would cope lovingly with any disabilities your children may have, what you can't do is bear thier pain for them should they be very drastically affected. No-one would knowingly inflict suffering on thier child if it could be prevented. Don't feel guilty because you are able to prevent your child and thier children from suffering. Every life is valuable, you're certainly not disrespecting other disabled people by screening for this disease. That would be like saying dont prevent Leprosy or polio, as that disrespects other people suffering from it. Great good luck for your future, and much love coming your way xx

  • Comment number 42.

    I would like to say Jono, that I think that you are truly are an amazing person and think that you have a wonderful girlfriend, you will make great parents. It is so right that what is right for you and your child may not be right for another family and you shouldnt feel guilty that you would prefer to go for PGD, you are considering the future of your child and grandchildren, nobody has the right to judge you or Laura on what road you decide to take all that is important is that you are both happy and that you have a healthy child. As for the low life despiciable scum that feel that they have the right to call you names and have the nerve to post comments on your facebook page, well as far as i'm concrened they are a waste of oxygen... I wish you and Laura all the best for the future which i'm sure will be bright.

  • Comment number 43.


    I just watched the documentary on BBC3. We've been through the same process but my son has an undiagnosed genetic condition so IVF PGD is not an option for us. We chose not to have any more children, which was the right decision for us, though the journey we took to get there was emotionally very difficult.

    Thank you for making such a fantastic documentary about the choices that so many parents face on a daily basis. Good luck to you and Laura with whatever the future holds.


  • Comment number 44.

    I have just watched So what if my baby is born like me and it moved me to tears you and your partner are truely inspirational to all, I wish you both all the luck in the world with getting your very much wanted baby,you hold your head up high Jono you are a diamond. good luck to you both.

  • Comment number 45.

    Hi Jono & Laura...
    You're a truly inspirational couple, just finished watching the program and wanted to send you all the luck in the world as you start your family. I can see why you have had a moral dilemma, but you must do what feels right for both of you and your child. Carry on ignoring those who put you down.. You come across as a really strong couple who will make amazing parents, if not more so because of all the thought and planning that has gone into making your decision. Good luck!! :-)

  • Comment number 46.

    I've never commented on any blog before but just had to say how truly inspirational you are. You and Laura obviously have such a strong relationship - any babies will be so lucky to have you as parents! Wishing you both all the best for the future.

  • Comment number 47.

    Really interesting programme!
    I have a genetic condition myself called osteogenesis imperfecta, and like you I have a 50/50 chance of passing it on. Although it's hereditary, neither of my parents have it, like you it's a mutated gene. I'm now 30 and the dilemma of having children is a subject that is often at the back of my mind.
    I won't go on and on, but I just want to wish you and Laura all the best and say thanks for an interesting and informative programme! It's always good to know that someone else is going through, and thinking about, similar issues.

  • Comment number 48.

    I have just watched your programme had already seen the 1st one a while ago and had to contact you. I really look forward to seeing how your futures progress and hope with all my heart everything you decide to do works out for you. You are both already going to make wonderful parents I only wish everyone that had children spent as much time and effort thinking about what they can offer a child and bring the best to its life possible, where I live is full of young girls still children having children with no thought of the life they are bringing into the world many times through selfishness. You are both loving sensible and commited to each other what more could a baby need than 2 people who love each other so much that they discuss everything that could happen to prepare for their beautiful baby, beautiful as it is a new life with whatever condition they are born with. I never had children and am past my sell by date for that now lol, but the joy of watching that couple with the pregnancy test had me in tears. I look forward to seeing you both living the same experience you deserve it......take care and good luck with I love your mum she is a truly wonderful lady the type u want to cuddle xxxxxx

  • Comment number 49.

    I have just watched your programme and just want to say you and Laura are amazing . Cant believe that people would send nasty messages to you . I wish you and Laura all the best for the future and cant wait to see future updates

  • Comment number 50.

    Wow, just watched what if my baby was born like me and i was so inspired by both your committment to find out all your options for starting a family. I would just like to send my best wishes to you both for the future, and i hope you get all you desire and deserve in the near future. Good luck and best wishes x

  • Comment number 51.

    What an amazing documentary, you and Laura are an incredible couple, any thoughts of marriage yet?
    I just want to add i've just been through IVF and was the best choice, I now have a beautiful girl, 5 weeks old. Nothing barbaric about IVF.
    Can't for your follow on shows, good show

  • Comment number 52.

    Having watched your programme I felt very moved. It is never easy in this so called 'perfect' world to fit in if you don't fit "the norm"! I remember from a very early age feeling so frustrated by the way my twin disabled brothers were stared at when we went out, but I do now realise that most of it is just curiosity, just like Jono spoke of and that most people are good and generous of heart. I wish you and Laura all the luck in the world and the most important thing is that you have a strong and loving relationship so any baby you produce will be lucky.

  • Comment number 53.

    Jono have watched both programs and think you and youre partner are a strong unit .
    a lot of people are sad and nasty and talk crap,
    i hope all gose well and you are both happy .

  • Comment number 54.

    Hi Jono I had a child with genetic disorders and sadly she passed away she had Mulieybr it stands for MU=muscle LI=liver EY=eye and BR=brain witch in shoter terms my Daughter was born with all her organs deformed. That is why I think you choseing the IVF is probley the best thing for you to do. Luckly I have not got 3 healty daughter with no problems. I wish you both the best of luck for the futer

  • Comment number 55.

    what a great and inspirational documentary! Don't worry about those 'people' on those forums - they don't have the intellect to understand inner beauty. I think your (both of you) analysis of the moral dilemas are spot on and to be congratulated. Ultimately, as your mother said, wrt IVF, you are thinking of your child rather than your own morall maze. As such I think you will be excellent parents -far more than some people that don't care about theirs. Good luck!

  • Comment number 56.

    Hey Jono, the programme tonight moved me so much I was going to send you a fb message but I suppose this is more appropriate. Its sad that there are shallow deluded people who think that because they have regular features they are somehow superior and have the right to be offensive. You and Laura are great, please stay strong and don't let the idiots get you down. Remember different doesn't equal ugly, ugliness comes from within. I have known people in passing with Treacher Collins Syndrome but never realised as I hadn't heard of the condition and didn't like to ask, so thank you for educating me. I wish you and Laura every happiness :)

  • Comment number 57.

    A brilliant and touching programme.

    I wish Jono and Laura the very best of luck for their and their families future.

    So many people can and should learn so much from you both and I feel humbled to have watched this programme, with all the participants showing such strength.

  • Comment number 58.

    I've just watched your programme and thought it raised some really interesting points. I can see the dilemma you're facing but feel you're doing so with remarkable maturity and sensitivity, parenthood is always a big step and I think it's a shame more people don't understand this beforehand!
    All I really wanted to say though is that I wish you both the very best of luck whatever your final decision. You'll be a wonderful Dad and hopefully the Treacher Collins is the only bit you won't pass on to your children, as the world needs more people like you. Incidentally don't waste time feeling worried or guilty now, kids make you feel that way from the moment they're born anyway!

  • Comment number 59.

    Jono,,,I would just like to write how i have enjoyed watching both of your programmes, You truely are a great inspiration, I would also like to say what a excellent job your mother as done raising you to be a very level headed young man.. I hope to see you on tv again in the near future when the time is right for you and laura with news of your family, I truely wish you and Laura a long and happy future together x

  • Comment number 60.

    I just want to say that I have watched both your documentaries now and that I am truly amazed by your courage and determination in raising awareness of Treachers Syndrome. I am disgusted at the attitude of some of the comments you have been subject to, unfortunately there are a few bad apples in every barrel but I guess they won't come forward and let us know who they are, thats how much bottle they have. I'd like to wish you both the very best in all that you do and long may it continue (what you're doing!!). Laura is right Jono, you have the option of having a baby without the syndrome, without passing on any pain or suffering, thats a great option to have and not morrally critical of others who have the diagnosis. You are not Treacher Syndrome, it's a part of you, a part of you that you can choose not to pass on, please don't feel bad about that. That would be my choice I think if it avoided the operations, treatments, pain and suffering. Having said this, i would also love my baby, like you, no matter what. May all your troubles be little ones!!!

  • Comment number 61.

    Please start a blogg Jono, my daughter and me love to know how you are getting on with the IVF PGD (?)
    We think you both made the right decisions: you were right not to feel guilty and laura to undergo the treatment for the IVF. Once you have that baby in your belly, you forget about a few injections, I promise you.
    Thanks for 2 beautiful documentaries!

  • Comment number 62.

    Jono and Laura, just watched your programme, what hard decisions you face, very difficult for you both but I think you are right to go for screening to stop a child going through a lot of pain and suffering, it would be hard on your relationship too, parenting can be very difficult at the best of times even without these dilemmas! You are a fantastic role model though Jono and should be a full time councillor and motivator for kids with similar problems to you, you relate so well to them. Good luck to you both whatever you decide, you deserve it and will make wonderful parents. Di Douglas, Salisbury.

  • Comment number 63.

    hey jono, i would just like to say that your prgrammes hae inspired me so much tht i am going to proceed in doing my ambitions on testing for genetic disorders. and whati wanna say to u is tht u r an inspriation to the world xx

  • Comment number 64.

    Just watched the programme, so what if my baby is born like me, found it very moving, you both are so brave and I wish you both every success in the future

  • Comment number 65.

    Wow, Jono, you and Laura are true stars! Never blogged before but just seen the 2nd documentary and you guys are so worth the effort. You're going to make brilliant parents. Good luck mate.

  • Comment number 66.

    Jono I think you are amazing and a truly beautiful human being, more people should be like you and I think it is a fantastic job you are doing, making people aware of your condition, particularly young children. Your adoptive Mum is amazing too and your lovely girlfriend too, she' a lucky lady. In tonights programme you talked about the unkind comments people have made, that made me feel very sad and cross, one day I pray that all this ignorance will be a thing of the past. Keep up the good work. Love to you and your family and best wishes in all you do. Lx

  • Comment number 67.

    Darling Jono and Laura - how I love you both so very much. I am in my 80's and have just watched your prog on TV. I don't think it really matters what a person looks like -its what they are and who they are -and you Jono are a beautiful loving caring person, and its obvious that Laura thinks the same.Its so easy to see past your face and to easily find the wonderful person inside. She is a very lucky priviledged girl to have you by her side and how I really wish that eventually your dreams and hopes of having a darling baby materialise -you would both, I feel sure, make wonderful loving parents whether your baby is completely healthy or not. He or she would be one VERY lucky child to have you both as parents. Darling Jono it really doesn't matter what a person looks like -its the person within that matters -and I feel that with you Jono most people would see immediately beyond your face -and when I see you all I see is a wonderful young man -I watched the programme tonight and all I felt was admiration, love, caring and a VERY special young man. I'm going now but would absolutely love to hear from you if you ever have a spare minute -as already said I am now in my 80's (and feel it !!!) Going to make a drink now -our darling Tiggie (cat) is fast asleep on his chair but just ONE magic word would wake him up immediately PRAWNS !!!!! but I won't do it now as I haven't got any de-frosted at moment but I will get just afew thawed out as a treat for darling Tiggie in a few minutes.I absolutely love and adore all animals and have a very tame darling Squirrel (Squiggie!!) who comes to our home every morning for his monkey nuts in their shells and the most gorgeous selection of wild birds come for their breakfasts. I keep having trouble with my 'puter -keeps playing up and mixing the words up in their sequences - blasted nusiance -but its always been like it. Bye for now -look after yourself and also your darling Laura
    See you soon and all love Betan (and Tiggie) xxxxxxx Tomorrow I will try to send you a photo of Tiggie -he is completely an indoor cat -not wise these days to let any cats out -even the RSPCA advise any cat owners to keep their cats indoors -
    Byeeeeeeeeeeee x x x x x x

  • Comment number 68.

    What a great documentary ! I would like to say that I think you would both make great parents with your compassionate natures and close partnership ! I am the mother of a child with autism and epilepsy and myself and my husband have recieved dirty looks and nasty comments if our son has an episode while we are out we find it is better to rise above it and walk away from these ignorant people after all they'll never have the satisfaction of experiencing that feeling when he does something new after alot of effort ! Well done Jono and Laura for raising awareness can't wait for the next documentary :)

  • Comment number 69.

    Hi Jono I've really enjoyed watching your documentaries so far, I hope you do continue with your baby plans!! And we get to follow your journey through parenthood. I'm a paediatric nurse and also a fairly new parent!!! I see children with conditions like yours every day. It can be heart breaking watching children suffer, especially if they have life threatening conditions. Its great that your programme has highlighted your genetic condition and problems inwhich you may face.Parenthood is HARD work but rewarding and the best job in the world! I wish you all the best for the future x

  • Comment number 70.

    Thank you so much Jono for sharing your journey with us. My partner has NF1 and we have been to see the genetic specialists and will face the same decision you guys are going through as and when we are ready to have children. It's such a tough decision to make, but your program has helped me to put a few things into perspective even though I am still no closer to a decision. That decision has to be a personal one made by the two of you and you should feel no guilt whichever path you choose. I wish you all the best for your future and will be sure to check in on how you are doing. Keep up all the good work with the kids and do not listen to the small minded minority - you are truly a beautiful person inside and out.

  • Comment number 71.

    :D so sweet watching a strong man like Jono :') (heh Jono sounds like a board game)

    wooooooooooooooow thats so difficult, Jono's a nature guy and adoption breaks his morals :( true that natural is the safest way forward.

    :) Adopting will just be a new experience... You wont be young again so live it up!! ...and anyway children raising is all worthwhile and forgotten when they grow up and leave you alone with memories (",) ...or whatever...

    In My Opinion Laura has to want to put up with the ugly along with the good, happy and heart-breaking memories... because she has to understand what Jono has gone through and still is in an emotional state.

    God bless your souls. Reality hurts sometimes. I hope you make good decisions and don't live to regret looking back. A new day shines a new light of hopes and dreams and I wish you receive kindness for being together.

  • Comment number 72.

    I have watched So What If My Baby Is Born Like Me? Big respect to you both as an amazing couple. I hope that you have your baby/babies and respect your decision totally. I am a mother of 3 children, 2 who have ASD. I work as a one to one support worker with Special Needs children and I am inspired by your relationship for my own children. Keep doing what you are doing and dont take any notice of narrow minded critics You are both beautiful xx

  • Comment number 73.

    Hi Jono and Laura. I watched your previous programme and also the one tonite. I think you are both lovely people. Jono, your personality and determination in life is a credit to you and the support you have from Laura is a delight to watch. You are a great couple and what ever you decide as regards a family will be the right decision for you both. The nasty, ignorant comments you received from some pathetic idiots are not even worth reading. You are a beautiful person, with a beautiful girlfriend and beauty is not a condition. I wish you a happy life. Suzan xx

  • Comment number 74.

    Jono, I feel that I wanted to come on here to express how greatful I am that there are people in the world like you and your partner. I was incredibly touched by your story and watching you go through that decision making process was both personal and thought prevoking. I have a genetic disorder of my own but who can't say that these days, lol. I have also been given similar options to you. At the end of the programme as you spoke about you fear that others with genetic disorders would feel insulted by your decision broke my heart because that is certainly not the case for me. This is your decision and anyone with a genetic disorder would understand the heartache you are going through. There is no right answer, just the right answer for you.

    Any child to be blessed with the both of you as parents would be extremely lucky. xxx

  • Comment number 75.

    Dear Jono and laura you both are wonderful people and wish you all the best for the future and really hope that both your dreams come true and that you have a baby together. This programme will hopefully help people that don't understand see we are all different.I also think its so amazing how you help other people/children understand and cope with what life may bring them in the future. Take care Ellie 8-)

  • Comment number 76.

    Jono, have really enjoyed watching both programmes & have to say you are an absolutely fantastic person. I hope you & Laura will continue to have a happy life & that someday you make your "mum" a very proud grandma! I wish more people in the world were like you - looks should be so unimportant in the grand scheme of things! Your sensitivity to others is amazing. I hope you are strong enough to ignore the comments of those who are nasty to you! They have a lot to learn about what's important in life! Good luck to you & I hope we get to hear how your story progresses!

  • Comment number 77.

    What a fabulous young couple. A real credit to young people who are constantly derided by the media.

  • Comment number 78.

    i was so moved by your personal journey, that it compelled me to contact you, i thought what a couragious, well balanced and wonderful young man you are, and the sheer determination you show to get on with your life is truly remarkable. I'd like to take this opportunity to wish you and Laura all the luck in the world in following your dream

  • Comment number 79.

    Hi Jono,just finished watching your second progamme ,i have to say u are truly an inspiration to so many people.You and Laura have such a great relationship,im sure u can achieve anything in life.I pray everything works out for u both in having a baby.You both deserve the very best that life can offer.God Bless u both.

  • Comment number 80.

    I know you have heard this a thousand times but I just wanted to let you know how moved I was by your programs, I've watched and cried to both of your documentaries. You and Laura are meant for each other, and I hope everything works out for you. And always remember anytime you receive a negative comment, you can look back here and see all those people who have been truly inspired and touched by the person you have become. Dont ever change, you are perfect the way you are x x x

  • Comment number 81.

    I saw the programme and have nothing but respect for the way Jono and Laura are looking at this decision in their lives. I understand the problems surrounding your decision and like you mum said Jono, no one knows what they would do given the sitution. I know from personal experience it is only you that can make the decision and that decision is the right one for you two. I understand Jono's moral dillema and also Laura's needs too. I had a child that was a one in `100,000 chance, no genetic links at all, but the effects were the same, the guilt is enormous, even when there was nothing you could have done to stop it. The genetic engineering makes sense, because at least if you go down that path, then the guilt will feel less I would have thought. I know if I could have done anything to have my child born 'normal' then I would have done it at the conception. I was offered an abortion at one point, when they thought he had spina bifida and I refused it, because I could already feel him move. It also turned out, he did NOT have the disorder, but completely a different one, that was undetected until birth, well as far as I knew, but I think I was kept in the dark. Lastly, Jono mentioned on the programme someone had said he was the ugliest person and I just have to disagree, the person who made that comment has got to have one of the ugliest hearts. I think after you have seen Jono for a while, the difference of facial features becomes less and less noticable, because who he is on the inside shines through so much.

  • Comment number 82.

    Hi Jono and Laura, I watched both of your programs. I am really proud of you both, and how well you cope with all the nasty things people say, You have inspired so many people. Its good the way you help other people cope. You both have something speical, and a really good relationship. Good luck for the future and Take care x x x x

  • Comment number 83.

    hi jono
    watched the 2nd documentary
    whatever you and laura choose when you start your family good luck with it but know this
    you will both be brilliant parents
    as for people bullying id be proud to have you as my boyfriend/husband and you have a very loving girlfriend and family no matter what anything thinks

  • Comment number 84.

    You and Laura are a truly inspirational couple. I can only wish you all the best for the future and whatever decision you come to.......not an easy one for either of you. Hold your heads up high and be proud of who you are, the negative comments you receive are from the ignorant and your work in schools may help to make this image obsessed society reflect on the true good that comes from within and shines through.
    Your decision on the way forward is a personal one, that only the pair of you can make and whatever it is it, will be right for you.
    Ignore your critics,ignore the shallow bullies, revel in being you and embracing all that makes you different. You are a truly remarkable person!

  • Comment number 85.

    Dear Jono, Laura and your lovely mum,
    I can add no more to what has already been said by others who like me have taken huge inspration from your story. Albeit to say that I see you as a very lucky, highly intelligent man who has an incredible talent with people, particularly children. You are doing some very very important work that will continue to instigate change. I wish you and your family only the very best for your future and I do hope to see a photo of you holding your own perfect baby (because that's what it will be whatever path you both decide to take) very soon.
    With love and admiration ....Sue

  • Comment number 86.

    Jono, your programs have reduced me to tears every time (though i cried at neighbors the other day) and i really admire you.
    I just wanted to say to Laura that i've been through IVF myself and my reaction to the idea of the egg collection procedure was much the same as yours, but when the time came they gave me a sedative (not a general anaestetic) which worked wonders, i didn't feel a thing, and now can't remember any of it!
    I really hope things work out for you two in the future and that whatever you decide you enjoy it. Jono I think you would be a great role model for any child you fathered!

  • Comment number 87.

    i was watching your programme last night and you and your girlfriend are amazing and also found it very touching.
    i myself was diagnosed with a genetic condition last october along with my little boy josh. i aslo think my two older boys have the same genetic condition as me brandon went through numerous operations when he was younger and my little boy cant walk talk or eat and hes not yet two was hoping the genetics test would find out why he cant do anything so not only do we have a condition called nail patella syndrome our poor little man may have another underlying condition also :(
    i took alot of stick from teachers and bullied at school because my bone structure was different to everyone elses but im a tough person i dealt with it my own way - the hardest bit was the teachers picking on me because i couldnt do certain things or id hold a pen and get through things in different ways you learn to adapt.
    would it have changed anything if id have known about my condition earlier on in life about the decision to have children im not sure but they are here now and im as good a parent as anyone else. you and laura will make such good parents and you will be a fantastic father whichever route you decide to take whether it be ivf or not.
    lifes hard and you have a very loving and supportive girlfriend i wish you both all the love and luck in the world:) x

  • Comment number 88.

    Jono & Laura - My 19 year old son also has Treacher Collins. Like beautiful Maisie's parents, it was a complete shock to us when he was born. Although there was never any doubt that we would love and care for our son and he has turned into a fine young man, I think that the information given in your programme that it is possible for him to have a child by IVF and not pass on the condition is very positive. At least people with genetic conditions have the option to decide which route to take. Like you, my son has a family that love him and a great circle of friends, but does have some confidence issues from time to time. Watching your programme has been a very positive experience for him. We have had nasty comments aimed at us over the years, but I thinks this just makes you stronger and more determined to live your life to the fullest. Both my son and myself will continue to follow your journey and support you and Laura every step of the way. xxxxxx

  • Comment number 89.

    Hi Jono, I was really touched by your programme. I do not have Treacher Collins but was bullied for years for being ‘ugly’. Although bullying is very cruel for the victim, its important to remember that its perpetrated by narrow minded frightened individuals desperately trying to cover up their own inadequacies. If I were you I wouldn’t pay any attention to the nasty people and I certainly wouldn’t look up their websites.

    I thought yours was a heart warming and uplifting programme and I applaud your honesty and bravery in sharing your experiences. I wish you both all the very best for the future.

  • Comment number 90.

    Hi well third time lucky maybe as previous comments didn't appear for some reason. What a couragous and super guy you are Jono along with your lovely Laura! I was so moved my the 2 progs and choked too at seeing how you strive to overcome all the issues, with to have such determination. Hope you continue to use that in your pursuit of a family with no guilty feelings of the why's and wherefores of the route you may be taking. Others have used this method of selection for what I'd say are far less deserving reasons and I'm sure you guys are doing the right thing. So as a nan of 5 lovely boys, go for it and give your lovely mum her grandchild! Wishing you both every success in the future and hope all your dreams for a family come true. Also that there'll be an update as soon as there's some more good news to share! Youi'll make lovely parents so go for it! Romilla

  • Comment number 91.

    Jono and Laura, you are both brilliant,what a sensitive and well made programme. I watched it last night and was blown away. Just to say by the end of it I was in tears, of joy I might add. I wish you both every happiness for your future and whatever you decide about having children I know you will love and cherish them. Wishing you all the best ChrissieM

  • Comment number 92.

    I have watched the programmes that you have featured in and this is the first time I have felt compelled to write.

    I think you are an amazing person and was very sad that your birth mother felt unable to meet with you as featured previously. I can truly say if you were my son I would be immensely proud of everything you have acheived and will hopefully continue to achieve. I wish you both nothing but the very best for your future however it pans out, you deserve nothing less. All good wishes

  • Comment number 93.

    Hey Jono...
    Just wanted to say ive watched both your programmes now and that you come across as an absolute star.Good luck in everything you do in life...Laura is a very lucky girl...your a lucky guy as well tho cos shes defo made of tough stuff...proper yorkshire bird!!! lol...xx

  • Comment number 94.

    Hi Jono and Laura,

    It was good to meet you both and be involved in your documentary if only in a small way. I have had lots of nice comments on my blog about you. I think for every bully who writes a nasty comment there are far more who are inspired by you and want to wish you well.

    I wish both of you success when you do start your family. If you go down the IVF route, it is a long emotional journey but so worth it, if you are lucky like Steve and I, and get the reward at the end.

    Best wishes


  • Comment number 95.

    Dear Jono, I am currently watching your newest documentary about you and your partner having a baby, and I just felt compelled to write to you and tell you how fabulous you are. I watched the first documentary as well and it is so fantastic to see your lovely personality shining through. The work you've done is absolutely superb, and your triumph through life's adversities is a total inspiration to everyone, no matter who they are or what they're going through. My teenage years were plagued by bullies and abuse, and it's so heart warming to see a fellow survivor continuing to strive for his right to a peaceful life. You are awesome! And also your tattoos are badass, and as someone who does Thai boxing I can tell that your sidekicks are also badass :)
    Lots of love and hugs, Hannah, 19

  • Comment number 96.

    Hi Jono, I admire your work and as a facially disfigured person from birth understand a lot of what you feel. I am in my 40's now and pretty content after a rough 20's. Its a pretty exclusive club but in an odd way we share a gift. Being disfigured lets me see through people at fiirst meeting. You ever want to chat give me a poke. Kind regards, Mark

  • Comment number 97.

    Hey Jono. My mum and I watched your documentary on Tuesday night and were deeply moved both by your strength and determination and your little friends you met filming the documentary. We both enjoyed it thoroughly. I just wanted to leave a comment telling you to keep strong and best wishes for you, Laura and the rest of your family in the future. You've inspired so many people, thank-you. :)

  • Comment number 98.

    Hi Jono
    I just wanted to drop you a line to let yourself and Laura know that you are both an inspiration to so many different people out there.
    The hateful comments that are left on Social Networking sites are from people who have massive voids in their lives.
    I honestly wish you and Laura all the best for your future together!!
    Luv Aideen in Belfast

  • Comment number 99.

    Jono, just finished watching you again this evening and just had to put into words what a truly lovely person you are with a huge personality. I really do rate you for what you are doing and can only wish both you and your lovely Laura all the best and more for the future together and hope you have lots of lovely children together. A truly remakable story. Love your mum by the way, she comes across as a great support for you. All the very best :-)

  • Comment number 100.

    hi jono I have never joined a site like this ever but I felt so strongly watching your program that I was compelled to write and tell you how much I admire what a warm intelligent caring person you are. Any child or children that you have will be one of the luckest children around. I am a teacher and come across lost of different types of parents and to me you will be one of the most decent, well mannered, grounded and intellectual role models any child could hope for. I wish you and your lovely partner all the vest best that life has to offer you. God bless and good luck. You have warmed my heart and restored my faith in humanity. When there is good people like you in the world, the world is a better place to live. Thank you for sharing your life you lifted my spirits. Liz


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