Help families like Ben's make the most of the time they have together. Donate now.
Time is limited for the children in our care.
We need your help to continue to support local families like Ben's facing a desperate reality - that their child might not live into adulthood and will need constant care.
Your donation means that Ben and his whole family will continue to get the expert care and support they so desperately need. Thank you for making a vital difference.
When Ben was born he didn't cry. He never made a sound. "He had slit-like eyes and his forehead seemed a bit too high. He looked perfect to me though, because he was my baby
Sarah, Ben's mum
When Ben was four days old, his family was told that he had a rare chromosomal abnormality causing difficulties eating and breathing, heart defects, slow growth and poor hearing.
Ben's breathing difficulties continued to get worse and he ended up needing a tracheotomoy- a tube into his throat to help breathe. While Ben only looks three or four years old, he is actually nine.
No one knows how long Ben will live but this is the hand we have been dealt. I can't imagine my life any other way now