Hope is a bright, bubbly cheerful five year old who suffers from a rare life-limiting condition called neutropenia. But despite of all these difficulties, Hope is a happy and sparkling child with an infectious personality and is developing day-by-day.
She enjoys painting, drawing, singing and spending time with her grandad John, who is her full-time carer. Hope, John and other members of the family have been coming to Richard House since 2014.
John first heard about Richard House through a social worker. Initially, he was not keen on the idea of taking Hope to a children’s hospice. He remembers:
I believed that a hospice was a place from which you don’t come back, for me it symbolised an end to one’s life. I had never been to a children’s hospice before so I really didn’t know what to expect. All this changed when I came to Richard House and saw what a fantastic place it was, with such a positive environment and friendly staff.
John has never looked back and he now brings Hope to the hospice regularly.
Hope loves coming to Richard House as she gets to meet other children and participate in the various activities run by the family support team. It makes me so happy to see how much she is enjoying herself here.
When asked which Richard House service John appreciates the most John says:
Respite care has been the most useful, as it gives me the chance to have a little break and regain the strength needed for me to be able to give my most to Hope. Looking after a child with a life-threatening health condition can be very challenging and you are constantly left worrying whether you’ve done everything right. I had to leave my job to become a full time carer but even that sometimes doesn’t feel enough, so to have that little break is invaluable. Richard House is a precious place that helps families to get recharged from their daily lives to return to their loved one feeling refreshed.
It is unclear how Hope’s health conditions will continue to affect her daily life or how the illness will progress, but her neurologist hopes she may be able to walk a short distance without a walking frame someday. Other health professionals had said that she may not ever walk and she has proved them wrong, so John is hopeful for her future, taking each day as it comes.