THE family of a boy who may never grow up hope to travel to the US to learn more about the rare condition he suffers from.
Two-year-old Rayth Morland, from Shildon, County Durham, has become only the fourth person in the UK diagnosed with MOPD.
The condition - microcephaly osteodsplastic primordial dwarfism - retards growth and can lead to poor eyesight, spinal curvature, dental abnormalities and an increased risk of strokes and aneurysms.
Parents Steven and Alison Morland want to make the fact-finding trip to meet medical experts and families with experience of the disorder at an annual conference in Detroit next summer.
They hope it will help them to give Rayth the best possible life and increase understanding of dwarfism conditions among British doctors and the public.
Mrs Morland, 40, said: "Much more is known about it in America.
"It is so rare here we don't have a clue what the future holds for Rayth - we hope it is a good one, as he's the most cheeky little devil.
"He's always smiling, shouting and giving love - he's a star and a miracle. Going out there would help us find out about treatment for the problems he could face and show him he is not alone.
"Having more information will be a comfort. We are so frustrated with the lack of knowledge here, which is simply because it is so rare."
Mrs Morland, 42, said that since Rayth was born prematurely, in April 2005, the family had made constant hospital visits. From birth, he was a sickly baby, suffering from reflux, lack of appetite and viral infections.
His physical development has improved slightly, but he still wears clothes made for a child half his age and weighs just over 19lb.
Mrs Morland said: "The past two years looking for answers about why he has had so many problems have been hell. Now we are even more worried. I'm not asking for sympathy, but for people to be aware of the condition and try to be understanding and considerate. People will stare and children can be cruel, but we hope if they know about Rayth's condition, they will be kind and he can have a normal life."
* A documentary called Extraordinary People: The Tiniest Boy in Britain, about another child with MOPD, will be shown on Channel 5, on Monday, at 9pm.
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