Bravery of Upper Clapton baby Rome, who has UK's only case of rare mitochondrial disease
PUBLISHED: 10:50 14 November 2018 | UPDATED: 10:56 14 November 2018
A 10-month-old Upper Clapton boy stuck in unsuitable temporary accommodation has the UK's only known case of a new mitochondrial disease - and his family are desperate to track down other affected people.
Rome Daniels was in intensive care for a month after being born in January, with doctors unable to detect what was wrong with him.
Then a month ago, his mother Ashilee Mitchell was told he had an extremely rare mitochondrial disease, ECHS1 deficiency, and he was the only child in the country with it.
“He shouldn’t have made it out of intensive care,” said Ashilee, 25. “There’s only 40 known cases and most have passed away within the first year of their life.
“He won’t walk by himself and we were told we have got until his mid-teens. But any normal cold or illness could kill him.
“His cells aren’t working properly so when he gets ill they try to fight the illness and forget to protect his vital organs.
“There’s no cure but we want to raise awareness and we’re setting up a fundraiser to put money into finding a cure.”
The Bradley Lowry Foundation, set up in memory of the youngster who died of neuroblastoma last year, is supporting Ashilee and Rome’s father Adrian’s appeal to find other affected families.
But Ashilee and her three kids also desperately need a permanent home. They live in one-bed temporary accommodation in Upper Clapton Road. Rome’s two older sisters share a room, with Rome in a cot in the living room. Ashilee needs a bigger, adapted place, to give the tot the best chance of living for as long as possible.
She explained: “I have three kids. One is terminally ill. If the girls pick up something at school they can pass it on to him and he could die.
“I’ve got letters from Great Ormond Street Hospital saying he needs to be in an adapted house for his needs and Hackney Council has accepted me for a three-bedroom house. But they said I have to bid and it could take two years. I understand there;s a lack of housing, but I don’t know if I will have two years.
“It would kill me inside if I knew he got ill through one of my daughters passing something on to him and then he passed away.”
A Hackney Council spokesperson said they learnt about the situation in September and gave the family “urgent band” status.
“The council is now working with the resident to find accommodation that is suitable for the families needs.”