‘We had no idea Charlie had any complex health problems when he was born’ – Mum and son Shirley and Charlie McIntyre from Anfield
A mother had no reason to suspect anything was wrong with her baby—until he reached four months old. Charlie McIntyre, now 14, appeared to be developing just like any other infant in his early months. But everything changed when he suddenly began experiencing seizures.
His family had no way of knowing that these seizures would eventually lead to a diagnosis of a rare brain disorder, one that would require him to receive 24/7 care for the rest of his life. His mother, Shirley McIntyre, from Anfield, recalled: “When Charlie was born, we had no indication that he had any underlying health issues. For the first four months, he was hitting all his milestones—lifting his head, progressing as expected. Then, out of nowhere, he had his first seizure.”
Charlie’s family was devastated to learn that his seizures were caused by a rare brain condition called Lissencephaly. This disorder severely impacts his ability to feed and swallow, altering the course of his life. His mother, Shirley, 51, shared: “Charlie can’t walk, talk, or even sit up on his own. After his diagnosis, the progress he had made suddenly halted, and the seizures continued.”
When Charlie turned five, the family was introduced to Claire House, a hospice that provides care and support for children with serious and life-limiting conditions. Shirley describes her son as having an incredible personality despite his challenges: “Charlie is such a joy—he loves lights, music, and being surrounded by people. But looking after him can be overwhelming. There’s no in-between with Charlie—he’s either calm, content, and sleepy, or he’s restless and upset, crying for hours.”
Caring for Charlie is a full-time commitment, and Shirley and her husband, Lee, 51, have come to rely on Claire House for much-needed respite. “Charlie’s grandparents used to help and even have him overnight, but now that they’re in their 70s, it’s just too much for them,” Shirley explained. “There are nights when he just won’t sleep at all, and exhaustion takes over. I’ve sat at the edge of my bed in tears, wondering why he’s in pain and how to help him.”
In those desperate moments, Claire House has been a lifeline. “There have been times when I’ve emailed them in the middle of the night, not even expecting a response, just hoping for support,” she said. “They always do their best to accommodate us, even when they’re stretched thin helping other families.”
When Charlie stays at Claire House, his parents finally get a chance to rest and recharge. “It’s a rare opportunity to do things we normally can’t—go out for dinner with his older sister, Beth, or even just spend time as a couple,” Shirley said. “The hardest part is choosing between catching up on sleep or making the most of every moment of freedom.”
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