George's Story

"I wouldn’t be coping as well as I am without family support worker Zoe"
Having been told she couldn’t have children, discovering she was over six months pregnant came as an enormous and welcome surprise to Lindsey.

Just eight weeks later, baby George arrived one month early but seemingly healthy, and Lindsey and husband Joe settled into their new lives as a family.

At five months, they started to notice some worrying signs. George’s eyes would flicker, he wasn’t tolerating his feed so well, and sometimes he would go stiff in their arms. Initially told there was nothing seriously wrong, they sought help again and George was admitted to Evelina London Children’s Hospital.

“We were there for a month, and then we were told one of the worst things a parent can hear,” recalls Lindsey.

George has Menkes disease, a severely life-limiting and rare genetic disorder in which the body is unable to absorb copper, an essential mineral for brain development and growth. Symptoms include seizures, weak muscles, respiratory problems and feeding difficulties.

The couple were referred to Demelza but at the time the news was too raw and they decided not to take up the offer of care. Four months later, Demelza family support worker Zoe Hill visited them at home in Sittingbourne and persuaded them to come along to the Kent hospice for another look.

“Before, I couldn’t see beyond the end of life care,” explains Lindsey. “Yes, there is always that element in a hospice but it is so much more – it’s about making memories and having fun.”

Now George comes in for respite care and the family enjoy the hydrotherapy pool and music therapy together.

Critically, Lindsey and Joe know they can rely on the on-going support of Zoe now and for as long as they need it. On the practical side, she has sourced specialist equipment like a pram and beanbag-style baby seat George can safely lie in; helped fill in forms for disability living allowance; and joined in meetings with the palliative care team.

But for Lindsey, it’s the emotional support she finds most valuable. “I wouldn’t be coping as well as I am without the support of Zoe. I know I can pick up the phone any time, and tell her just how I’m feeling. For instance, I find it hard seeing other babies hitting their milestones and Zoe helped me realise it’s ok to feel grief that George isn’t the child we thought we’d be getting. But he is our gorgeous George and we love him just as he is.”

Could you help us provide support to our families? Find out how to donate to Demelza.