A DESPERATE Poole mum has turned to crowdfunding medical assistance for her daughter because, she says, the NHS isn't providing the help she needs to stave off the effects of her condition quickly enough.

Little Julia Radek, 4, has Rett syndrome, a rare genetic disorder that affects brain development. It can result in severe mental and physical disability including scoliosis of the spine, and the loss of ability to walk.

Her mum, Ewelina, who lives in Bournemouth Road, said the local NHS is providing around six sessions of speech and language therapy each term. However: “It only lasts half an hour and each time she goes she seems to get a different person and it’s really hard for her to get used to.”

She claims that three of Julia’s last six sessions were cancelled, and is now paying for private sessions along with physiotherapy and a special diet. She says this has already helped her daughter who started to show signs of the incurable syndrome when she was just 17 months old.

“She started waking up 20, maybe 50 times a night, screaming and shouting and stopped talking and they told me it might be a reaction to the birth of her younger brother, Szymon,” says Ewelina, who is a single mum.

She said Julia was not diagnosed until earlier this year but she had become so concerned about her deterioration that she started the private treatments. Now she says she has seen an improvement in Julia’s muscle tone, with Julia learning to feed herself again with a spoon.

“I work part-time and fit everything round Julia; we get Disability Living Allowance but that is only £300 and I am already spending £500 a month on therapy,” she said. “It is really hard – I had to go to the bank for another loan and I am paying interest but I have to keep going, I can’t just sit and wait because she will get worse.”

She hopes to raise £2,000 and has so far been given £360 by well-wishers on a crowd-funding site. “Julia is my princess and my sunshine,” she said. “I cannot just sit and let this happen to her.”

*You can donate to Julia’s appeal on justgiving.com/crowdfunding/juliarettsyndromeunequalstrugglewithgenes