Bradley Howe

Harvey (my son) was born with a very rare genetic disorder (Glycogen storage disease type 4). He wasn't diagnosed until roughly age 11, but he had struggled for a few years before. It affected his liver and muscles causing weakness, fatigue and muscle loss. Unfortunately in September 2015, Harvey's heart was affected causing a high risk of sudden death. Slowly over the years Harvey deteriorated but still had a normal as possible life. He had lost a lot of weight (37kg), sadly it became too much for his heart in May 2018. Harvey spent 4 weeks in Evelina Children's Hospital but because of his condition was not suitable for a heart and liver transplant.

Harvey made the decision to leave hospital, knowing he had between 3 days to 3 weeks to live after they withdrew his medication. Harvey was so happy to be discharged home and we were able to look after him with support from professionals. Harvey lived for another 5 weeks at home surrounded by family and we made some very special memories during this time. Haven House 'Hospice at Home' service gave us the confidence to nurse Harvey through to the end knowing that there was support available 24 hours a day. He was extremely brave and passed away on 25th July 2018, due to heart failure. He was 16 years old. Harvey spent a night in the Haven House Butterfly suite after he passed away which allowed us more time to say goodbye.

I am running the London Marathon on Sunday 28 April 2019 to raise money for Haven House who supported Harvey and all our family during this very difficult time. This is a personal challenge for me as I am training towards completing the marathon in under 4 hours.

Bradley Howe