Harold Hill mother of tragic baby out to beat killer disease
- Credit: Archant
A heartbroken mother whose baby daughter died of a rare genetic disease that “took her smile away” wants to raise awareness of the killer condition.
Evelyn Elizabeth Brown was diagnosed with mitochondrial disease four months ago. On November 2 she passed away in Haven House Hospice in the arms of mother Keeley Johnson aged just six months.
She and partner Jason Brown had already been told their daughter would not reach her teens, but four weeks ago Evelyn was put on life support and the couple were told she had just weeks left.
“We were absolutely gutted, it took her pretty quickly,” said Keeley, of Masefield Crescent, Harold Hill. “When we found out we didn’t know anything about it. You’d never have known there was anything wrong with her. It hasn’t sunk in yet.
“She was a very active baby and smiled to begin with, but the disease took her smile away.”
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About one in 200 babies are born with genetic changes that can lead to mitochondrial disease, for which there is no cure and very few effective treatments. Mitochondria are responsible for producing energy in the body’s cells - the power station. When a person has the disease, their cells are not producing enough energy.
Keeley, 37, added: “We want to try and find a cure. It’s killing children, babies - parents are going through it every day. We want to get it out there.”
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The family have raised almost £1,400 for a walk from Harold hill to Queen’s Hospital in Rom Valley Way, Romford, for The Lily Foundation - a mitochondrial disease charity.
After staying in Haven House in Woodford Green for the week following Evelyn’s death, Keeley praised the charity’s work.
“I can’t fault them, they’ve been amazing,” she said.
Mike Palfreman, chief executive of the hospice, said: “We’d like to offer our sincere condolences to the parents and family of Evelyn Brown. We feel honoured that we were able to provide support for the last days of Evelyn’s short life and could offer some comfort to her family.
“Our bereavement staff are now focused on being there for the family as they come to terms with their loss.”
Donations can still be made at justgiving.com/Evelynsstory/2