East Midlands

Since his diagnosis in 2007 Liam’s parents, Joanne and Robbie from Nottingham, have been trying to find out what the future holds for their very special son. 

Inside Out has been following their progress as they learn to live with Liam’s rare condition.

Liam is three but he’s still in three-month-old baby clothes because he is so small.

For Jo and Rob learning that their little boy has something so rare has been really difficult but they’re just determined to do the best they can for him.

Sharing experiences

Around the world there are only about 100 people with the same condition as Liam.

So, for Liam some of the only people who can really help are children just like him and their parents and that means a trip to the other side of the Atlantic which is where many primordial dwarfs live.

Joanne Smyth says: "The main experts are the mums and dads. In America there are parents who have been dealing with this for years.

"I’m still getting my head round it but they can teach us so much."”

Once a year people from all over the world travel to America for a special convention run by the Little People of America.

The 2008 convention was held in Detroit and it provided a chance for Liam and his parents to meet other families to find out how they cope with such a rare diagnosis and speak to medical experts.

Gary Arnold of the Little People of America says: "It’s an opportunity to share experiences. We have people from Canada, Brazil and Portugal this year."

With only around 100 primordials worldwide the chance to meet up is almost as rare as they are.

Liam’s dad Robbie Smyth told us: "To have so many children with the same condition in one room is just brilliant.

"When Liam was born we were told he was the only one and we were so alone. To have a roomful of them is just wow."

Hope for the future

The children were also able to meet the oldest primordial in the world, Sharon Alberts, who is 46-years-old.

She gives Liam’s parents hope that his life may be longer than they’d first thought.

Genetics Expert Dr Michael Bober from Delaware is a world expert in primordial dwarfism and agreed to meet the Smyths while they were at the convention in Detroit. 

Living proof - Sharon, oldest surviror.

Children like Liam are prone to brain haemorrhages and his parents have been told in the UK that he will need to be scanned every three years.

It’s a huge worry to Jo and Rob but Dr Bober is able to give them the latest advice on how often Liam should be examined.

Dr Michael Bober says: "If we can find something before it reaches the critical stage and we can intervene, they need to hear that otherwise they’ll treat him like a walking time bomb."

Meeting the medical expert is an emotional moment for Liam’s parents who live with the fear of losing their son to a sudden aneurism on a daily basis but it’s a once in a lifetime chance to discover what the problems may be.

Liam’s mum Joanne Smyth says of the trip: "I feel a lot more confident about bringing Liam up and I feel a lot more privileged about bringing him up.

"All the parents have been blessed with these special children."

And for Liam and his family, the trip has been a vital lifeline for the future...