What were they like?
Both of them had completely different personalities. Hajara was very easy going, if you picked her up, if you gave her attention that was fine, if not, that was ok. Sajida was the complete opposite. She was a drama queen and she wanted lots of attention.
How did it feel when you discovered that your first daughter was terminally ill?
I couldn't believe it. I just felt as if I wasn't in my body and this was some kind of drama or a dream and that this couldn't be happening to me. When they gave us a list of things that were going to happen it took a long time for it to actually sink in.
My faith really helped me because I stared to pray and started to ask questions and started to explore and started to draw strength as well to bear what was ahead because it was a rough ride ahead. And just to try to concentrate on the quality of life for both children however short it was and that was the focus for me and my husband and family.
Tell me about the illness itself
Sandoff's Disease is something that we never heard of. Many GPs, many experts haven't heard of it as well. It's a disease that affects children who have parents who are carriers. Sajira and Hajara didn't have an enzyme. I don't know the name but basically, it breaks down fatty acids. That's what they didn't have, they didn't have one enzyme that breaks down fatty acids.
These fatty acids would then accumulate and they would destroy the cells. And when it comes to the brain cells that don't regenerate, that's where most of the damage was, which is why it's terminal. But physically, you can see, they look fine. But in the brain and through the brain scans that's where it wasn't right, the white matter wasn't right. They deteriorated very gradually.
Tell me about your first daughter and the emotional process you went through when you discovered she was unwell, and then coping with knowing she was going to die.
Well, it took a long time for her to be diagnosed and that was difficult, that was more difficult than actually being diagnosed because once she was diagnosed we knew where we stood and we knew what was going to happen.
She would have days where she would be completely spaced out, she looked like she was on drugs. We took her to her nine month check up and the Health Visitor turned around and asked "what have you given her?".
We didn't have anyone who could explain to us what was wrong with them. They had every test you could think of, and it was only until they has a brain scan. And I had my fears because with Hajara she never picked up anything, she never knew that I was her mother, although she could hear my voice, it was very difficult. She was having problems swallowing as well. So not knowing what was happening was difficult.
Once we knew it was when it was easier for us to cope with because then we knew we had to make the most of this time that we had with them. This short time. So it was about the quality of life and what you made out of each day that mattered the most.
You said you received a list of what was going to happen. Do you mind sharing what was on that list?
It was a horrific list that I try not to remember. Fits. Muscle spasms. Loss of sight. Loss of hearing. Basic degeneration, feeding as well. Because the brain controls everything, the swallowing process is extremely complex. We just realised how complex our bodies were because if the brain isn't in touch with the body and giving the right signals to the body, then you do shut down slowly, slowly.
So even something like swallowing, these children weren't able to do at about 9 months. What would happen is that fluids or what they were digesting would go into their lungs, so they would aspirate. Later on as well, especially with Sajida, she couldn't cough and she couldn't secrete, so then we would have to suction her.
Simple things that you would take for granted meant a lot of trouble and a loss of quality of life for both children so it meant a lot of nursing and 24 hour care for the children. They weren't able to sit up after a while. And with Sajida, she lived longer than Hajara, her muscles were shortening because she wasn't using them or walking, but her bones were growing and that was extremely painful. So we would massage her and use aromatherapy, again, for quality of life and that was how we coped to concentrate on the quality of life.
Tell me about some of the things that you did to improve that quality of life.
Well, crazy things, and a lot of things that we learnt from Acorns Hospice and other organisations that did things to aid the quality of life for children who had special needs.
|"They were both little girly girls. They loved pink. They loved their toys. They just enjoyed life. They made the most of each day and they were strong"|
|Iram Khan, mother|
For example SENSE came one day and played with Sajida and she used toys and interactive touching and feeling and smells. And the amazing thing that she did was to wait for the response and sometimes it would take a few minutes but it did come and that was the amount of quality of life.
These children with special needs, you have to be patient with them and wait for that subtle little change and that's what we did. They both loved water, so we had lots of nice big baths and we would use homeopathy. We would take them into the garden and use wind chimes and music and just take them from where they were into another place so they would think about other things than the illness, something that you and me would like to do if we were feeling sorry for ourselves.
We had some lavender and mint. They loved mint. We had this wonderful lip balm that tingles on your lips when you put it on, and we would put it on their lips and you could tell after a few minutes that her eyes would just open up and mmm, she could smell it and she could feel the cooling on her lips and that would really, really help her.
Tell me about some of the positive aspects that other people got out of the sense of how you were caring. Tell me about this positive feel when they visited you even though it seemed like such a difficult time that you were going through.
When you stepped into our home many people have said that it feels really peaceful here.
What was more important was Sajida's quality of life and not her illnes. There was a lot more to her than her illness and her dying. She was still alive at that moment and there were so many things that she would want at that moment and it was about how can you enhance that.
If you're not feeling positive it's very difficult to do that. We did have a lot of positives and her care was the centre of our lives. How she was feeling - that's what kept us going.
How did your faith help you to do that?
Our faith helped us because a lot about Islam is about mercy and compassion and looking at things a lot deeper than they are, appreciating what you have and not feeling sorry for yourself.
That's where I got a lot of my ideas from. How can I enhance her life and enhance Hajara's life? What can we do/where shall we go here? She likes water, let go for a holiday, let's make the most of this life.
Not having that fear factor, making that most of that day, not thinking about tomorrow, that really helped us. I might not be here tomorrow. That's one of things I used to say to my husband. I would say: "We're waiting for her to pass away, a lot of people are expecting that, but who's got the guarantee that I'm not going to be here tomorrow. It isn't just about Sajida or me, it's about all of us and how we can live together happily."
And live together for today?
For today, because you don’t know about tomorrow, but not even for today, I think it’s for the moment. We were close to death so many times that if we only had an hour we would make the most of that hour. So many times she got close to death, both children, and we were told many times, she won’t make it through the night, so we made the mot of the time that we had. And we would pray, at the difficult times we would pray and then we would feel calm and serene and peaceful and then we could attend to all the different needs that she had, the nursing needs staying up at night, we had to be there for her and our faith really helped us to be strong so we could be there for her.
What did you say in those prayers when you were praying and you thought you only had an hour, and indeed when it was that last hour.
I asked for strength. I admitted our weaknesses, especially mine as a mother. I'd find it hard and please give me patience to help me through, and I did find it. I think every prayer I asked for I found it. One of the last prayers that I said before she passed away was - it's not that Sajida's passing away, I know we all have to pass away, it's that I'll miss her because she's my daughter. And then I had a thought in my mind and in my heart: "don't you miss me?" And that, as a Muslim, I believe that God created everything, and God created the love that I feel for her. God created her and He's the source of all of this. This beauty and this compassion. I've never seen God, although He’s given me this child and I can feel love and I can feel compassion, and I can feel creation as well, and I could focus myself then on that meeting with God.
Did you ever have any doubts or questions that arose? Was your faith ever shaken?
I don’ think my faith was ever shaken. What I did question was my whole outlook on disability and what people have to offer. And what was more import ant was it the status or the position that your children have or how long they live, or what they bring to this world? Or, what they give you? And certainly my children didn’t live very long in this world, and they didn’t speak, but what they gave us and what they taught us was much more. That’s invaluable, however short their lives were. It wasn’t a waste of a life at all, I don’t see it like that and I certainly don’t see disability like that as well. Each one of us has something to give and that’s something I truly believe in now, having gone through all of that.
You don't look at it though, that God was trying to teach you a lesson, do you?
No. Not at all. Certainly not. We don't believe that in Islam. Children are born innocent. Children go to Heaven and that's where we believe Sajida and Hajara are. They're in paradise. When it was hard and she was in pain, that’s what we would do, we would recite the Qur'an and we would recite the passages that describe paradise and how beautiful it is.
So what's the future for you?
Living for today, of course. I'm continuing with my job. We looking into adopting which is something we've always wanted to do because I just love children so much.
I would like to continue working with disabled children and befriending families with children who've got metabolic disorders because when you can speak to a parent who knows what you're going through you can understand more rather than read a print out from the internet. Sandhoff's is a very rare disease - the medical profession only see it once every five years.
Both children were much more than Sandhoff's disease. They were just normal children that liked normal things. They liked dressing up, they liked to watch Tellytubbies. They were both little girly girls. They loved pink. They loved their toys. They just enjoyed life. They made the most of each day and they were extremely strong. It's very hard not to be strong when you have two such strong and resilient children like that and their strength brushed off on other people as well.
For more information visit the website for Climb (Children living with inherited metabolic diseases) using the link at top right of page