NUFC's Steven Taylor makes splash for Anya Potter

Nov 17 2008 by Chris Robinson, The Journal

BRAVE Anya Potter was joined by Newcastle defender Steven Taylor yesterday as she launched a fundraising drive aimed at finding a cure for her illness.

Making a splash in the water, the four-year-old is full of cheeky laughs like any youngster her age.

But behind the smiles lies the heartbreaking knowledge that she is living with a terminal condition for which there is no cure.

The Hexham youngster is the only known child in the country to have been diagnosed with Leukodystrophy which affects the insulating coating around the nerves. Doctors predict the youngster will not live beyond her teens and will gradually lose mobility and the ability to co-ordinate the use of her muscles.

But for the moment her strong-willed family are living life to the full. Their determination has led to more than £20,000 raised to fund research into the condition – mirroring the 1992 film Lorenzo’s Oil, about two parents searching for a cure.

Friends and family joined together yesterday to add to the fundraising drive as they took to the water for a half-marathon swimathon.

Little Anya even managed two lengths of the pool with father Craig as she launched the gruelling challenge. There was also support from Newcastle United defender Steven Taylor, who met the youngster and her one-year-old sister Taylor at the city’s West Outer Pool, West Denton.

Her parents, Kerry 28, and Craig, 29, first realised there was something wrong with their daughter when she was two and started to drag her left foot.

The youngster was eventually diagnosed in February by two international doctors and a specialist based in Holland is currently researching the condition.

Craig, a production operator for Northumbrian Water, said: “When we found out about Anya, it was horrific.

“The disease breaks the body down and it is heartbreaking what she is going through and what she will go through.

“It is unbelievably frustrating that there is currently no treatment or cure available.”

The family are hoping the event will raise awareness about the condition and fund research.

Mother Kerry added: “She was fine during the swim and enjoyed it. The funds are going to be used for research and it was brilliant that Steven came along to help raise the profile.”

The family have hosted a number of fundraising events over the past year since they were told the heartbreaking news and have received enormous support.

Taylor, England under-21 captain, said: “When I first heard about Anya’s condition, and was asked to help the fundraising campaign for her, I didn’t hesitate in saying yes. She is clearly an incredibly brave little girl.”

Anyone wanting to donate to the Anya Potter Appeal, can contact her mother Kerry on 07900 196490 or email anyasappeal@googlemail.com