A BRAVE little girl who battles through life with a rare condition, will receive therapy not provided by the NHS, thanks to well-wishers.
Bolton youngster Lilly-Mae Skidmore, who will be six in a fortnight, is one of a handful of kids in Britain to have Koolen Syndrome - a condition so rare that it has only just been named after the Dutch doctor who discovered it in 2006.
Lilly’s health is impaired in many ways and epilepsy, asthma and neurological problems all contribute to her difficulties.
She has not attended the therapy centre at Somerset that helps her enormously for a year, as her family is stretched for cash, and the treatment is not available on the NHS.
Now fundraisers staged by Swinton Co-Op staff have raised £830, meaning Lilly can and will go to Brainwaves at Somerset as soon as can be arranged.
Lilly’s mum Vikky, 34, said: “When Lilly was diagnosed we were told by doctors she wouldn’t walk or talk. Other parents told us about Brainwaves and when we took Lilly they could tell us exactly where Lilly was developmentally and gave us a programme to follow. Through that Lilly has talked and done things we never expected she would.
“We only have occupational therapy twice a year on the NHS due to budget cuts, and at Somerset we get taken so much further...”
In some ways Lilly’s health has deteriorated, said her mum. Her epileptic fits, mobility and vision have worsened, and she is to undergo more tests at Sheffield Children’s Hospital soon, in a bid to find out why.
Only weeks ago, Vikky and husband James, 42, held a fifth meet-up for nine families of kids with Koolen Syndrome, at their home on Billingley View. Two families travelled from France and Denmark. But it will be the last party they are likely to host due to the cost.
Recently, Lilly’s brother Ryan was honoured at the Wellchild Awards in London for his devotion to his sister.