Upper Clapton baby with UK’s only case of rare mitochondrial disease fights for his life in Great Ormond Street Hospital
- Credit: Archant
A 10-month-old baby with the UK’s only known case of a new mitochondrial disease is fighting for his life in Great Ormond Street Hospital.
Last week the Gazette covered the story of Rome Daniels, who was recently diagnosed with ECHS1 deficiency.
He lives with his parents and two sisters in a one-bedroom temporary accommodation flat in Upper Clapton Road that top doctors have said is unsuitable for him given his needs.
His mother Ashilee Mitchell has been pleading with Hackney Council to be moved into a bigger home so Rome can have his own room and avoid catching illnesses from his family – which for him could be life-threatening.
“His cells aren’t working properly so when he gets ill they try to fight the illness and forget to protect his vital organs,” Ashilee said last week. “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.”
And days later that is what Ashilee fears has happened. Rome is now critical in hospital with respiratory syncytial virus (RSV) – a common illness for most children but for him, extremely serious.
You may also want to watch:
“They think he might have some kind of brain damage,” Ashilee told the Gazette. “Hackney said they would contact me but no one has. Every day someone tells me they will call me back but they haven’t, even though my son is fighting for his life.”
A Hackney Council spokesperson said last week the family had been given “urgent band” status on the housing list.
- 1 Lower Clapton restaurant to hold free meals event for struggling people
- 2 Jealous Dalston murderer stabbed victim through his heart with scissors
- 3 Hackney mother seeks compensation after living with mice infestation
- 4 Hackney tenant who was left 'terrified' for years reaches court settlement
- 5 Olympic boxer joins fight to make vegetable poverty history in Hackney
- 6 Hackney Half marathon to go ahead amid uncertain Covid restrictions
- 7 Stamford Hill singer says Hackney people helped him on creative path
- 8 Tributes paid to Hackney sports hero and coach Lloyd Cowan
- 9 Lower Clapton blaze damages maisonette
- 10 Police issue fines worth £15,000 after suspected illegal rave in Hackney
They added: “The council is now working with the resident to find accommodation that is suitable for the families needs.”