Hospice helping Romford mother treasure the time she has left with her son
PUBLISHED: 14:19 08 December 2016 | UPDATED: 18:07 08 December 2016
A mother whose first baby died of a rare neurological disorder faces the prospect of losing her second child to the same condition.
Keeley Johnson’s daughter Evelyn died when she was just seven months old from Leigh syndrome, a condition which causes rapid muscle weakness, affecting mobility, feeding and breathing.
Keeley, of Romford, was still grieving Evelyn when she discovered she was four-and-a-half months pregnant with son Logan.
It came as a shock and Keeley was terrified Logan would also have Leigh syndrome – when he was five months old her worst fears were confirmed.
Haven House Children’s Hospice is supporting Keeley, and Logan, through this difficult time and his mother is asking the public to dig deep and make donations to the charity to support other life-limited children and their families.
“This Christmas is special to me as I am fully aware that it could be Logan’s last,” she said.
“It’s so comforting to know that Haven House will be there for Logan when the time comes.”
Over the last few months, Logan has developed epilepsy and is having up to 10 seizures a day.
“Much of my time is spent alone with Logan and it is hard to get out as I don’t have a car and I have to take so much equipment with me,” added Keeley. “When we do go out it’s mostly to hospital to have endless tests or meetings. The one trip we do look forward to every week is to have music therapy at Haven House.
“Logan gets so excited, he reaches out and listens and I see expressions on his face that I have not seen before – I like to think he is trying his best to smile at his mummy.”
A £27 donation could pay for a sensory play experience, while £54 could pay for a child to have 30 minutes of one-to-one music therapy
Keeley said: “I know that when the time comes to say goodbye, Haven House will be there to support us for as long as we need it. You cannot overestimate how much that means to me.”
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