Zac, who is unable to sit independently and uses a special feeding tube, was just nine months old when he was diagnosed. The disorder also impacts his kidneys.
He has three older siblings – Ruwaida, 15, Talha, 11, and Huzaifa, eight.
“One of the things that impressed me most was the support for our whole family, not just Zak,” said Ms Kauser.
She suspects more people would use the service if it was “more local… especially as some people might not drive and be able to get to Milton”.
Ms Kauser is also keen to raise awareness among people of all backgrounds about what hospice care can offer, “because no-one wants to talk about death”.
“It’s not just about death and dying – instead, it can be a happy place where people enjoy spending time, creating memories, experiencing different things and meeting new people,” she said.
“Before EACH came along, I thought of hospice care in black and white, but now I see it in colour.”