Rome Daniels: Mum of Upper Clapton baby with UK’s only case of rare disease raising £50,000 for lifesaving treatment in US
PUBLISHED: 15:04 04 February 2019
The mother of a baby boy with the UK’s only known case of a rare mitochondrial disease needs to raise £50,000 for lifesaving treatment in Texas.
Rome Daniels, one, was diagnosed with ECHS1D in October. His mother Ashilee Mitchell was told he would never walk and would live until his mid-teens at the latest, but because his cells don’t work properly a common cold could prove fatal.
Ashilee, of Upper Clapton Road, shared Rome’s story with the Gazette in November, saying she needed a bigger home so Rome wouldn’t catch illnesses off his sisters. But days later he did, and spent the next two months fighting for his life and suffered brain damage. He can no longer smile and has “gone back to having the skills of a newborn”.
Ashilee said: “A clinical trial needs to be funded which gives my boy a fighting chance of making living with this condition easier and potentially gives us a lot more years together.”
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