Basildon: Girl Only In World To Have Condition

31 January 2014, 00:00

Madison Hunt is thought to be the only person in the world with Chromosone 19 Disorder.

A couple from Basildon say not knowing more about their daughter's condition makes it difficult to plan for the future.

Doctors believe five-year-old Madison Hunt is the only person in the world with a disorder affecting her 19th chromosome. 

She suffers autism, epilepsy and delayed brain development. Her mum Kelly told Heart it's frustrating not knowing more: "She's baffled doctors. No-one can give us a prognosis. 

"They've looked on databases around the world to see if there's anyone a little bit older than Madison that we can get an insight into. 

"If you had a diagnosis you could research it so you can be aware of what happens in the future, you can prepare for that. But as we have nothing to go on we can't, it's day to day living." 

Kelly says it has a big impact on her daughter: "Instead of being your average five year-old, her brain is very underdeveloped. It's more like an eight-month old. 

"She can't fully understand everything, she can't talk, she's still in nappies. Everything that an eight-month old can do, basically is Madison." 

Madison is now taking part in a research project by Great Ormand Street Hospital in a bid to find out more information about the condition. 

Kelly, and her husband Mark, are now trying to raise £5,000 for a sensory room to help her development. 

She explains what will be inside: "It'll have aromatherapy for the smell, lavender to calm her down, fibreoptics that she can lie on which will also calm her down, different colours and tactile walls for different textures. 

"Where she has autism and doesn't really understand things she gets overwhelmed and has a melt down, it'll be a place of calm for her. It'll also be a place of safety, because she's not aware of her safety." 

They have set up a website, madisonspage.co.uk, for anyone to donate to. 

Kelly says they've already had friends take part in fundraising efforts: "Some of the boys wore Arsenal shirts for a week and they got £120 and they're Spurs supporters! 

"My friend Natalie has really long hair and she's doing a Jessie J and shaving all her hair off in April. "We're so thankful for everyone who supports us."