A mother who lost her first baby to a rare neurological disorder and faces the prospect of losing her second child is raising awareness of her story as part of this year’s Christmas appeal for Haven House Children’s Hospice.

Keeley Johnson from Romford wants the public to dig deep and make donations to Haven House during the festive period in order to support other life-limited children and their families throughout North East London and West Essex.

Her son, Logan, was born on 1 December 2015 with Leigh syndrome - a severe neurological disorder which causes rapid muscle weakness that effects mobility, feeding and breathing.

Keeley lost her first baby, Evelyn, to the condition in 2014, when she was seven-months-old. Haven House cared for Evelyn during her short life, providing Keeley with time for precious memories.

Keeley was still grieving the death of her first child, when she found out she was four and a half months pregnant with Logan. It came as a shock. Keeley was terrified that Logan would also have Leigh syndrome - but he initially appeared healthy. Keeley thought she could now enjoy being a mum again.

However, at five months he stopped drinking and feeding and began to cry lots. She was told he had reflux but Keeley knew in her heart he too had Leigh syndrome. Not long after, her worse fears were confirmed.

Haven House is now supporting Keeley and Logan through another difficult journey. Logan has lost his smile, makes no sounds and is not able to sit up.

Keeley said: “I lost my precious Evelyn at seven-months-old, so this Christmas is special to me as I am fully aware that it could be Logan’s last. It’s so comforting to know that Haven House will be there for Logan when the time comes, just like they were for Evelyn.”

Over the last few months Logan has developed epilepsy and is having about ten seizures a day. The majority of these are at night which means Keeley is not getting much sleep.

Keeley said: “Much of my time is spent alone with Logan. It is hard to get out as I don’t have a car and I have to take so much equipment with me. When we do go out it’s mostly to hospital to have endless tests or meetings with various consultants.

“The one trip that we do look forward to every week though 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.

“I know that when the time comes to say goodbye to Logan, Haven House will be there to support us for as long as we need it. You cannot overestimate how much that means to me.”

How you donation can help:

  • £27 could pay for a sensory play experience in our interactive sensory play room
  • £54 could pay for a child to have a 30 minute one-to-one music therapy session
  • £67 could pay for two hours of support to families from our Bereavement Sister
  • £128 could pay for a toy home loan visit
  • £232 could pay for four hours of care for a deceased child in our Butterfly Suite

To read more about Keeley and how Haven House supports her and her family, and to make a donation, call 020 8498 5841 or visit our Christmas appeal page.