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Upper Clapton baby with UK’s only case of rare mitochondrial disease fights for his life in Great Ormond Street Hospital

PUBLISHED: 17:57 21 November 2018 | UPDATED: 17:57 21 November 2018

Rome in hospital.

Rome in hospital.

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.

Rome is believed to be the only child in the UK with ECHS1. Picture: Polly HancockRome is believed to be the only child in the UK with ECHS1. Picture: Polly Hancock

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.”

Rome in hospital.Rome in hospital.

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.

“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.

They added: “The council is now working with the resident to find accommodation that is suitable for the families needs.”

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