Halifax family's plea as daughter battles rare condition SPG50
By Katie Oscroft
The family of a three-year-old girl who is thought to be one of only two people in the country with a rare genetic condition say she will end up paralysed without £250,000 of treatment.
Dua Ahmad, from Halifax, suffers from the degenerative genetic disorder spastic paraplegia 50, or SPG50.
Thought to affect only around 80 people worldwide, it causes developmental delay, with intellectual disability, impaired or absent speech, small head size, seizures and motor symptoms. There is no cure.
Dua's mother Nadia Ahmad, 38, said her daughter could be in a wheelchair by the age of 10, and quadriplegic by the age of 20 unless she receives treatment only available in the United States.
"Dua's body would go into paralysis, starting with her toes and eventually leading to the brain," she said.
"It's a race against time, it's vital that Dua gets to have the treatment before the paralysis kicks in. Now that we know there is a treatment we will fight tooth and nail to try to get it."
The only treatment is a drug called Elpida currently available under a clinical trial in America.
If the drug is authorised, Dua's family would be able to pay for her to have it privately at a cost of £250,000.
They are now campaigning to raise money for the treatment and awareness of the condition.
They post about Dua on a social media channel and have begun a fundraising appeal.
"This is hard for us as a family because I never posted my children on social media but we have now created a TikTok account called Save Dua to raise awareness and raise money.
"It's difficult to comprehend that the treatment is there in a fridge in America and the only barrier is money."
The condition is so rare there are only around 80 people affected across the world.
"We have had to explain to doctors about the condition, we got told what it was but there was no further guidance," said Mrs Ahmed
The treatment we are raising money for stops progression, Dua is a happy smiley girl and we really don't want to lose that."
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