Thanks for taking the time to visit my JustGiving page.

I am doing the Zip Wire Challenge in memory of my cousin / godson Harry. He was born with a very rare condition, and in fact, was the first child in England to be diagnosed with it. It is called Malignant migrating Epilepsy of Infancy. Harry never had less than 150 seizures per day from the age of 10 days old. Most days his parents gave up counting them at 250. He was blind and quadriplegic. Harry 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.  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. 

As Harry's condition deteriorated the hospice provided 'hospice to home' care in addition to the in house respite. Two Claire House nurses were with the family for Harrys last few hours. They ensured that he was comfortable so that his parents could spend those precious last 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 and changed him into clean pjs and he stayed in the Butterfly suite until his funeral. 

Every single day, Claire House Children’s Hospice needs over £6,500 to cover its cost of care - with administration costs, that’s around £2.7million a year. With little guaranteed government funding, they need donations for everything. 

' Claire House where quality of life is pecious '