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I am running the Liverpool Half Marathon in memory of my nephew Harry. He was born with a very rare condition called Malignant migrating Epilepsy of Infancy. Harry never had less than 150 seizures per day from the age of 10 days old. He lost the ability to eat and drink at 11 months old and was fed through a tube into his tummy. Harry needed 24/7 care.

Claire House came into our lives when Harry was 6 months old.  It is not a sad place, rather it is filled with laughter, positivity and care. The hospice provides respite and end-of-life care for children and young adults with life-limiting medical conditions. They are also there for the entire family, providing support and counselling for as long as is needed. “Living with a life threatening or life limiting condition is draining on a child or young person. And equally as draining on their parents and families. Claire House offers a sanctuary for children, young people and their families, allowing them to forget about the daily routine and simply enjoy themselves. 

As Harry's condition deteriorated the hospice provided 'hospice to home' care in addition to the ‘in house’ respite. “Hospice to Home is a home-based service providing specialist respite, palliative and end of life care and support to children and young people and their families within the family home”. Two Claire House nurses supported the family at home on the day that Harry died. This ensured that he was comfortable and pain free and that his parents could spend those last few precious hours cuddling him and telling him how much they loved him. 

When Harry had passed away, the nurses drove Harry and his mummy and Daddy to Claire House. They bathed him and put clean PJs on him. He then stayed in the Butterfly suite until his funeral. “When the time comes, we work alongside families to make a child’s last days as comfortable as possible, caring for them either in the hospice or their own home. Our Butterfly Suite is a tranquil place of rest, where families can spend time together in a private space, giving them time to reflect”.

Death and disability do not discriminate and it is quite possible that one day many of you reading this will be in the position of needing the services of a Children’s Hospice. Every single day, Claire House Children’s Hospice needs over £6,500 to cover its cost of care - with administration costs, that’s around £2.7 million a year. With little guaranteed government funding, they need donations for everything. 

"Claire House where quality of life is precious"

www.harrysjourney.co.uk