A nine-year-old girl is just one of 100 people worldwide diagnosed with a genetic disorder likened to Parkinson’s disease in children.
Heidi Cooke was born with BPAN (beta-propeller protein assisted neurodegeneration), a disorder that was only identified by researchers in 2006.
Her mum Kerry said Heidi has limited mobility and speech, and may die before reaching her 30s.
Ms Cooke said she hoped to raise money to fund research into a cure.
She said it was “devastating” to think she would outlive her daughter but was hoping to fund research into treatments.
Heidi is currently at stage one of the condition, but as she gets older will experience symptoms of dementia, is likely to lose her sight and suffer tremors and painful muscle seizures.
Ms Cooke, 38, from Leicester, said: “Everything has to be done for her. It’s like having a baby in a nine-year-old’s body.
“She has always been disabled and we thought she just had delayed development, but in fact she’s declining.
“I would have been preparing for what happens to Heidi after I have gone, but now I’m expecting to outlive my own daughter.
“It is quite devastating.”
Ms Cooke, a mother of two, is training to be an occupational therapist at the University of Northampton, in order to care for her daughter and help others in the UK who are diagnosed.
She has also begun fundraising for greater research into the condition and alternate treatments.
To date there is no cure or specific treatment for BPAN and Heidi has to be treated with medication give to people with Parkinson’s Disease.
“She’s [Heidi] going to die in middle age but I’ve tried to see the positive in this,” added Ms Cooke.
“I’m hoping to spread the word and help find a way of treating this.
“I’d love for Heidi to live a long and happy life.”