Caring for a child who is going to have a short life can be incredibly isolating because your friends and family don’t really understand what you’re going through. That’s why having bespoke care and support provided by children’s hospices and Together for Short Lives is so important. They really listen and step in to help the whole family when you need it most. Find out how they helped Carrie and her son, George.
My George was the happiest little boy. He was Peppa Pig mad and just loved his family. George was also a fighter throughout his life.
Born with Cerebral Palsy and severe bleeding on the brain, he spent the first five months of his life in hospital. With me travelling between there and home because I had other children who needed me as well.
Thankfully, we got to take George home and as he grew his health stabilised. He was able to start school, and our little family were able to settle into a new routine.
But the routine was short-lived. When George was six, he suffered two seizures at school, with a third leading him into a coma.
Fighting for care
Over the next fifteen months, I felt like I had to constantly fight to get the care and support George needed. It felt like nobody was listening to me.
One day, after a brain scan revealed fluid on his brain, I received the news no parent wants to hear. There was nothing more that could be done to keep George alive.
A lifeline
We were told that we would only have about 48 hours left with him, so we were introduced to our local children’s’ hospice. My George, the fighter, gave us twelve precious days before he died.
With so much to organise and unexpected costs in the first few days after George’s death, staff at the hospice referred us to Together for Short Lives.
One of the ways they help is to offer financial support for bereaved families in the form of their Butterfly Fund grants.
When your child is dying, you want them to have everything that they could want. But you still have to keep a roof over your head and look after your other children. Life has to carry on.
The Butterfly Fund grant, they gifted us meant that I didn’t have to choose between paying for George’s funeral or getting the week’s food shop for my other children.
We were able to have a funeral with touches of Peppa Pig everywhere to truly celebrate George’s life . And my family could eat that week.
The support Together for Short Lives gave us didn’t just help me, it helped eight other children. It helped a whole family when it mattered most.
Butterfly Fund grants
Find out more about Together for Short Lives Butterfly Fund grants – how you can apply for one or support other families in need of them by clicking here.
