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Living With Wolf-Hirschhorn Syndrome
Imagine if your child had a syndrome that causes malformations in most parts of the body and severe mental retardation. The Marston family had to cope with this when Francesca was born 10 years ago.
Little Francesca Marston suffers from Wolf-Hirschhorn syndrome.
This causes malformations in most parts of the body because the genetic error affects fetal growth and development
It is estimated to occur in 1 in 50,000 births and it was only began to be investigated in the 1960s.
Babs Marston says: "Even in the medical profession very few have heard of it.
"The best description of the syndrome is global developmental delay. Every aspect of her being is affected detrimentally.
"At ten she really has the abilities of a six month old baby."
Listen: Bringing up a child with Wolf-Hirschhorn syndrome.
Babs and Dave Marston talk about their ten year old daughter
Husband Dave says: "She likes a lot of stimulus. She likes me to cuddle her and there's a lot of eye contact."
Babs says that the desire for eye contact is relatively new and it shows that in spite of everything she still has the capacity to learn."
180 people - mainly children - have the syndrome in this country. And because there are so few and because the syndrome is so little known support is difficult to come by.
Babs remembers that when Francesca was first diagnosed "A piece of paper from a medical textbook was shoved into my hand. It was at least 30 years old!"
The reference library finally found a support group. "There are only two or three cases in each county but getting involved in that network was wonderful," she says. "you have to cope because you have a vulnerable baby and you need to be there.
While carrying Francesca it was apparent she was very small and there were concerns. When she was delivered it was clear there was a problem.
Babs is admirably stoical about the situation: "Like any difficult situation you have to deal with it.
"But the first six months were very tough... Francesca's birth father couldn't cope and left. Dave gave up a full time job to become a full time carer."
There is a strong possibility that Francesca will outlive her parents. This, says Babs, is a concern.
But it is difficult to think that a baby such as Francesca could ever have such devoted parents.
last updated: 28/01/2009 at 15:31