Fundraising for Natasha at ‘Stute

Distraught mum Janice contacted the ‘MAIL’ just two months ago when she discovered her daughter was diagnosed with the crippling illness Friedrich’s Ataxia.

Shocked that her beautiful daughter will be destined to be wheelchair-bound for the rest of her life, Janice took to researching the disease and discovered a pioneering possible solution in China.

However, this new treatment costs a fortune and the family began a fundraising appeal. To date £600 has been donated.

There is a fundraising night in the Mechanic’s Institute on Saturday, May 26, with a raffle and disco.

The Mourneview’s girl nightmare began during a sunny summer holiday in Tenerife when her mum Janice noticed her then 15-year-old daughter’s spine was badly curved.

“It just seemed to get bad almost overnight,” said Janice.

Initially when Natasha went to the doctor, she was diagnosed with scoliosis, a non-life limiting condition which causes a curvature of the spine.

However, soon after this diagnosis, Natasha developed a ‘gait-step’ where she would slap her feet while walking instead of walking heel to toe.

After even more tests, the doctors discovered that Natasha had severe nerve damage in her hands and feet.

Her mum took her a to a neurologist at Belfast City Hospital who carried out DNA tests on Natasha and discovered she had a rare genetic mutation called Friedrich’s Ataxia.

This is a rare inherited disease that causes nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination that worsens over time.

The nerve damage results in awkward, unsteady movements and impaired sensory functions plus this disorder causes problems in the heart and the spine. However, it does not affect thinking and reasoning.

Natasha is still coming to terms with the diagnosis and says it is an ‘awful shock’.

She discovered that some people with this condition had received stem cell treatment in China which resulted in remarkable improvements to their mobility.

Natasha already has serious problems with mobility and has been told by doctors here that she will probably be in a wheelchair within between 10 and 20 years.

However, undeterred the family have decided to start fund raising now to try and get cash for the specialised treatment in China.

Both her and her mum believe it might take about ten years to raise around £200,000 to pay for treatment in China. At the moment they don’t know how much it is going to cost but they believe it will be a substantial amount.

They are starting to raise funds now and are leaving buckets behind shop counters, organising car boot sales, having raffles and sponsored walks.

“I have been told that I will slowly go down hill and will lose my independence,” said Natasha.

“It’s very scary, ” she said. “I might be in a wheelchair by the time I raise money for this treatment.”

Natasha explained that already she is starting to trip up. “My legs just give up on me and some days I can’t walk without help, ” she said. “My legs and arms get very sore and sometimes I have no strength in them.”

Her mum said it was very upsetting as some people in the neighbourhood believe Natasha is drunk as she is so unsteady on her feet. “If people would just ask us, we would be quite happy to explain to them about Natasha’s condition, ” said Janice.