We are a family living in London, UK. We have two sons. Our eldest, who is now six, was born 8 weeks premature. He was in intensive care, then the NICU for three weeks.
We first noticed that our baby seemed to bend one of his feet awkwardly at 6 weeks old. We alerted the doctors at his hospital, but were dismissed. Our boy grew very strong but was late to crawl, and didn’t walk until he was 3. By the time he was 18 months, his doctors suggested that he had cerebral palsy, because his muscles were hypotonic (or weakened).
Our diagnosis of Type II collagenopathy came quite recently, when our son’s condition did not follow the normal course of cerebral palsy, and I was moved to develop this site to help other parents and carers in a similar position, as we couldn’t find any useful resources to help us support our son.
We don’t have any medical or scientific knowledge beyond what our experience has taught us, but are happy to share what we know with you!
All the best,
Lee and Izzy