One of our mum's, Keeley, has bravely shared her story this Christmas to help raise awareness and donations for the hospice.

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 unable 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 spends much of her time alone with Logan. It is hard to get out as she doesn't have a car and she has to take so much equipment with her. When she does go out it’s mostly to hospital to have endless tests or meetings with various consultants. The one trip that she does look forward to every week though is to have music therapy at Haven House.

Keeley said:

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 your 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

Please donate now.