Liam's Story

12 September 2019

Liam was born a healthy baby but at six months old, caught a virus that would change his life completely.

Mum Chrissie, said: “He stopped feeding, had a high temperature and kept screaming, so we took him straight to the local children’s hospital.” When a consultant noticed something wasn’t right, Liam was immediately referred for scans and tests, and was found to have a global loss of white matter in his brain.

Liam, now 10 years old, will never be able to walk, is severely visually impaired and has global developmental delay. Not long after this diagnosis, Liam began experiencing seizures. “It was gutting to find out,” said Chrissie. “We didn’t know what the future would look like for him, but we knew it was going to be hard.”

It was when Liam was almost five years old that it became near impossible for him to swallow or keep down his food and medication, eventually becoming so frail from that he had to be intubated and taken to intensive care. It was at this difficult time that Chrissie first faced the possibility she may lose her son. “It was decided we would try to get him home for end of life care,” she recalled.

Liam continues to fight on however, and will soon celebrate turning 11 years old. “His health status changes almost daily,” Chrissie told us. “We deal with each day as it arrives. When times have been very dire, knowing we have the support of Angie and the Community Team at Demelza East Sussex has helped us beyond words.”

Liam is now medicated and fed intravenously with a regime of 4-6 hourly infusions, meaning he is no longer able to attend school apart from an occasional visit, so Health Care Assistant Tammy comes to spend quality time with him. “It gives Liam a fun relationship in his life which we really appreciate,” said Chrissie. “He enjoys music and sensory play, or getting messy with paint! Tammy knows Liam well enough to understand him and also what it means to get a smile from him, because even that is difficult for him to do now.” For Tammy, Liam’s delight is the ultimate reward. “I love what I do,” she added. “I’m 68 but I’m not ready to retire yet - I’m not going anywhere!”

 

Did you know?
All families supported by Demelza Community in East Sussex also have use of our children’s hospices Demelza Kent in Sittingbourne and Demelza South East London in Eltham.