Fundraising helps pay for operation so 6-year-old with rare disorder can walk

A six-year-old from Hemel Hempstead born with a rare genetic disorder has had an operation to help her walk independently, thanks to £20,000 raised for her treatment.

Emma Timofte has Incotinentia Pigmenti which left her unable to walk, crawl or stand on her own. Despite this, she is a happy child who loves going to school, singing and playing with friends.

Her parents Stefania, 36, and Narcis, 33, raised £20,000 for treatment in Greece with the help of friends, family and the children’s charity Tree of Hope.

The operation called SPML (selective percutaneous myofascial lengthening) is a minimally-invasive procedure and was done to help reduce Emma’s stiffness to allow her to walk.

Stefania said: “The operation has made a huge difference to Emma – she’s now able to take a few steps with a walker and doesn’t collapse in the way she used to.”

Her mum added: “However, she now faces years of therapy to help get her strength up and hopefully achieve her dream of walking independently.”

Despite the great help of the operation in Greece, Emma requires intensive therapy - 10 sessions in five days every few weeks, which costs around £100 per hour.

Stefania explained: “We are committed to doing everything we can to help Emma become as mobile as possible, but it’s going to be a long and expensive journey. Every penny counts and we would be extremely grateful for any donations.”

To donate to Emma’s fund, visit this page.