Family have condition so rare it may be named after them

David and Cat Lambert with family. Picture: Ross Parry Agency
David and Cat Lambert with family. Picture: Ross Parry Agency
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FIVE South Yorkshire siblings have been told they are the only people in the world suffering a unique genetic condition - so rare it might be named after them.

Parents Cat and David, both 37, are seemingly unaffected but Bethany, 16, Leon, 14, Dawson, nine, Nyle, eight, and Miya, seven, all have the condition.

Each of the children have a tell-tale abnormal bone between their eyes, struggle to develop muscle and have trouble with their joints.

Not all their adult teeth grow and they are prone to developing a twisted spine.

Some of the children also have learning difficulties as a result of the condition - which affects all the children to varying degrees.

And after half-a-decade of research doctors could now even name the condition - Lambert’s Syndrome.

Cat said: “Doctors from all over the world have been left puzzled by the condition affecting my children.

“DNA samples have been sent to experts at Cambridge and Oxford Universities.

“They have even sent DNA to experts in America, Canada, Finland and Sweden as part of ongoing research - but no known syndrome has been discovered yet.”

Teaching assistant Cat added: “It seems to affect all the joints in their bodies mainly.

“So they are either unusable - because they are so stiff - or so overly flexible that they dislocate constantly.

“Leon’s fingers used to dislocate around 50 times a day. He used to see it as some kind of party trick when he was younger, but it gets extremely painful for him after a while.

“But then Dawson can’t even make a fist with his hand because his fingers are so stiff. I don’t think we’ll ever get to the bottom of what the syndrome is.

“We’ve had so many tests now and they’ve not been able to find a match against any known condition in the world over.

“Doctors have said it is extremely rare for a syndrome like ours to be discovered in this day-and-age.

“One consultant even said that they could name this condition after the family if future tests are inconclusive.”

She added: “It’s definitely a claim-to-fame, I suppose, but a claim we could live without.”

The child most affected by the condition is Dawson and the brave youngster has had a constant string of operations since being born.

Cat said: “Dawson was born in June and had his first operation the following January on his pelvis.

“He even had bone cut of his hip and put into his feet to help him walk - almost like a skin graft with bone - to reconstruct his feet in four places.

“He had to be in a wheelchair for approximately nine months after that operation because he can’t grip crutches because the joints in his hand are so stiff and he has very little muscle growth.”

Every 18 months the youngster has to have an operation to stretch his tendons because they do not grow - at all.

He will need these operations until he reaches the point when he stops growing. But despite this, the brave youngster - who could barely even manage one footstep after the surgery to reconstruct his feet - recently completed a 10-mile trek in aid of Sheffield Children’s Hospital, who performed the operation.

Despite the condition, Cat says the family, who live in Wath-upon-Dearne, South Yorkshire, are “normal and happy”.

Cat said: “You are constantly being presented with new challenges in life and this one is ours.

“We just get on with things, though. We are happy, we are normal and we would not have things any other way.”