Hospice gives very poorly child hope

Brave Ashley Roberts, 11, of Somercotes, suffers from Type Two Spinal Muscular Atrophy and is supporting the Rainbows Hospice.
Brave Ashley Roberts, 11, of Somercotes, suffers from Type Two Spinal Muscular Atrophy and is supporting the Rainbows Hospice.

A brave youngster who is severely disabled is urging people to support a children’s hospice which has given him a lease of life.

Ashley Roberts, 11, of Somercotes, suffers from Type Two Spinal Muscular Atrophy - a neuro muscular condition that affects nerves around the spinal cord leading to muscle wastage.

But the Rainbows Hospice for Children and Young People has been supporting Ashley, and the youngster and his family are urging people to attend the charity’s open day on September 20 and help it to meet it costs.

Following Ashley’s diagnosis, Sarah said: “We were crushed and I felt like my world had caved in. It’s expected that Ashley will never have a full life. It was a hard time but it has given me a new perspective. Ashley helps me to be strong every day. It used to upset me that Ashley wouldn’t have the same life as others but watching others with the same condition inspires me.”

Because of an 81 degree curve in his spine, Ashley underwent surgery at Nottingham’s Queen’s Medical Centre where he was fitted with rods and wires that expand as he grows. Ashley gets around in a powered wheelchair.

Sarah added: “Ashley needs a break and we need to trust people to take care of him. Rainbows is perfect for that. He loves it. He is always smiling at Rainbows. He has the freedom to do what he wants. He doesn’t get a lot of special attention as he is one of a big family.”

The open day will be at the hospice, in Lark Rise, Loughborough, from 10.30am to 3pm. The charity provides care for seriously ill youngsters from the region.