THE parents of a girl whose rare condition means she is less than half the size of her friends are raising money to help other affected families travel to the USA.
Finn Davidge-Hesketh stands 28 inches tall at five years of age due to microcephalic osteodysplastic primordial dwarfism type 2 (MOPD II), a condition which affects just four people in the UK.
But the Borras Park Infants School pupil is a “feisty” girl who is full of fun, according to her parents, Melanie Davidge, 30, and Jon Hesketh, 34.
Now the couple want to raise £20,000 for the Walking With Giants Foundation to enable other families to go to The Little People of America Convention next summer.
Melanie, Jon and Finn, of Caia Park, have been to two conventions in America before and said they found them a massive help.
It means families can share experiences with others of different ages affected by primordial dwarfism and also speak to medical experts about it.
Jon said: “It’s an awesome experience and quite an emotional one to meet other parents and be able to talk about it.
“It’s also great to see Finn playing with kids who are the same proportion as her.
“You can also relate all your worries and concerns to each other.”
The main concern for Melanie and Jon is that Finn has a 50 per cent risk of developing brain aneurysms and Moyomoya disease, two potentially fatal vascular conditions that could develop at any time.
Following a recent MRI scan at Alder Hey Children’s Hospital in Liverpool, it was feared that Finn might have developed Moyomoya.
But a later angiogram gave her the all-clear and now doctors in America are going to double check the results. Jon said: “Doctors here said there was no imminent threat but it is concerning, obviously. It breaks your heart when your child has something like this and you want to wrap them up in cotton wool, but you can’t.
“Finn is not a burden to us. She’s just smaller and needs more medical attention.
“She is just a little girl and is smaller than others.
“She’s independent, quite feisty, bubbly and she is great fun.”
Melanie said: “She does not let her size frustrate her.
“She is a typical five-year-old and she doesn’t let anything bother her.
“She is very thoughtful and doesn’t go headlong into it.”
To raise the money, Jon and friends will be taking on The Three Peaks Challenge, climbing Snowdon, Ben Nevis and Scafel Pike, and will soon be setting up a website to promote fundraising.
Finn is also to appear briefly in a Channel Five documentary later this month about another girl from the UK, thought to have a similar condition.
The Tiniest Girl in the World is due to be broadcast on Channel Five on Monday, June 21.
Finn appeared in another Channel Five documentary, Extraordinary People: Britain’s Tiniest Toddlers, in April 2009.
See full story in the Leader