Jay’s Story

Blog » Personal Stories » Perthes

In the summer of 2020, Jay started getting pains in his leg after playing out with his friends, he was developing a limp so we knew something wasn’t right.

After discussions about growing pains and possible Leukaemia we took jay to Alder Hey. He was lucky that Professor Perry was on duty that Sunday evening, this was when we found out Jay had Perthes Disease. 

Learning about this rare condition was very hard, the information online is horrific and the information out there is very conflicting, most of it was based on American treatments and all were quite dated.

We were told Jay would need an operation and Jay got given a cancellation to have it on November 5th. We couldn’t wait and Jay was determined to be out looking at fireworks, Unfortunately that wasn’t going to happen. 

Jay went for his operation around lunch time and was late at night before he came back out, encased in plaster and unconscious. He was going to be immobile for almost 2 months then would need to learn to walk again.

He had his cast removed just before his birthday. He had to attempt to walk in a frame, he was due to be in for his birthday but he tried so hard to walk they decided he could go home early and spend his birthday at home.

Jay’s journey has been tough,  but the hardest has been putting up with the pain that he still gets and is likely to have for the next year or two. As a parent this is heartbreaking and frustrating in equal measures. Because there is a lack of understanding people are very dismissive and don’t see how much anyone with Perthes Disease suffers. Jay is determined to get better and loves playing football with his mates.

It’s been tough for us all as a family but the suffering mentally has been the hardest as we weren’t prepared for that. He’s missed out on so much in terms of activities, parties, playing with his friends because his mobility has been limited. Things other kids take for granted. 

We looked and saw a fighter, he saw he was different. His confidence was destroyed but he’s slowly building that back up day by day. We’re strong as a family, he’s started training with a football team weekly and is going to the gym. He’s so determined to get stronger and fitter so that he can do everything his friends can. We are battling through this together with the help of our family and friends and of course Jay being the determined, strong boy that he is.