Wrexham girl faces a fight for survival

Reporter:

Claire Gallagher

A LITTLE girl who suffers from a rare type of dwarfism is facing life-saving brain surgery.

Aged five, Finn Davidge-Hesketh stands at just under two feet three inches tall.

She suffers from a type of primordial dwarfism which affects only 17 people worldwide and only five people in the UK.

The condition means she is at high risk of developing brain aneurysms and Moyomoya disease, two potentially fatal vascular conditions.

A recent scan showed the Borras Park Infants School pupil had a narrowing of arteries on the left side of her brain.

It means she will need the brain surgery within the next 12 to 18 months.

People affected by Majewski Osteodysplastic Primordial Dwarfism Type 2 (MOPD2) like Finn often need life-saving operations.

Her dad, Jon Hesketh, of Caia Park, said if Finn did not undergo the surgery, she could have multiple strokes.

He said: “It’s a difficult decision but if she doesn’t have the operation, her arteries will narrow and she could develop Moyomoya.

“I don’t want her to have to have an operation, but she needs it, so we haven’t really got a choice.

“There are higher survival rates now, which gives you hope, so you have to grab on to that.”

Jon said they knew a little girl with a similar condition who did not have the operation and died after having about 30 strokes at the age of 11.

“That drives me to make sure Finn has the operation to keep her standard of life,” Jon said.

“We try not to think about an operation until we go for scans to see how she is.”

Doctors from Alder Hey Children’s Hospital, Liverpool and Stanford Hospital are working together to discuss possibilities for Finn’s surgery.

Meanwhile the youngster is living life to the full and doesn’t let her size affect her.

“As long as people see her as a five-year-old girl and don’t treat her like a baby, that’s fine,” said Jon.

“She’s so tough the way she gets on with it.

“She’s got this energy and passion for things.

“We feel lucky to have her and this doesn’t change the way we bring her up.”

Last week Jon and some of his friends took part The Three Peaks challenge  – climbing Snowdon, Scafell Pike and Ben Nevis – respectively the highest mountains in Wales, England and Scotland – to raise money for the Walking With Giants Foundation, a support group for sufferers of primordial dwarfism and their families.

The money will enable others affected by dwarfism to attend a convention next summer organised by The Little People of America Convention, a similar support group based in the US.

Finn, Jon and mum Melanie have consulted doctors in America who specialise in very rare conditions and hope to raise £10,000 for the foundation to give other parents the opportunity to do the same. If you can help with fundraising, go to www.justgiving.com/walking-the-giants.

See full story in the Leader

Leave your comment

Share your opinions on

Characters left: 1500

Most Read