When Fred was 3 he started complaining of pains in his left leg, at first we thought he’d pulled a muscle. He was a typical 3-year-old boy running and jumping off everything. He kept complaining, sometimes of pain in his left knee, and sometimes he had a limp. We had several trips to the doctors, drop-in and Alder Hey. After about 3 months of being mis-diagnosed with a hip infection, irritable hip, he was diagnosed with Perthes Disease.
We were told it was so severe he would need an operation straight away as his movement was so bad. They put us on the waiting list at Alder Hey and told us to come back in 6 weeks for his pre-op. His pain went from bad to worse very quickly. He didn’t sleep, sometimes he couldn’t put his left foot down with the pain. After a few trips to Alder Hey we were given strong meds to give him at home, but these would just knock him out. Although he needed the pain relief, it was horrendous to see him like this.
We went for his pre-op to be told they didn’t want to do the operation on someone so young so, for then, after a second opinion at Alder Hey we were told we just had to see what happens. We were heartbroken not knowing what was going to happen, what we could do or how long this would go on for. Dr Perry has been amazing and with us every step of the way. The support from him has got us through. Dr Perry monitored him closely and Fred has never had an intervention.
It had a huge impact on our lives in the early days, we had to totally change the way we lived our lives, we were limited to what we could do and where we could go. Simple things like going for a walk, to parties, who we visit, where we go, how much travelling etc. We had to consider how much walking was involved. There were very few parties he could go to as they were normally soft play, football, or trampoline parks.
We had always been an active family and this had changed in terms of us being active together. We couldn’t just go to the beach for a walk with the dog. Fred could walk but not for any length of time as his leg would get sore. Generally, we used a pram, but he hated going in it. He would as long as we explained to people about his hip and why he was in a pram. His dad would put him on his shoulders but the position of his hip when he’s been on his dad’s shoulders meant his hip would stiffen really quickly and get sore.
For his dad and I it was just heartbreaking seeing your baby in so much pain. It’s the pain that affected us the most. Knowing as parents your child is screaming in pain and there’s nothing you can do to help. You feel it in the pit of your stomach. It wasn’t going to beat us, and we’d do everything in our power to help him and we have.
We are so lucky to have support from our amazing family & friends and Lily has always been the best big sister anyone could ask for.
Looking back now I think people just didn’t understand, it’s a rare disease and the other problem was on good days Fred looked like there was nothing wrong and he could do anything any other child could, but it was the fallout afterwards that his body couldn’t cope with, and he would suffer terribly if he did too much. People didn’t see the bad side though. Very few people have.
We only shared positive pictures on social media and hid away with the curtains closed when he had a bad day until he’d recovered. We would try to shelter him from people seeing him. We certainly didn’t show how bad it got so I suppose it’s hard for people to understand without seeing it.
Fred is now 10 and doing amazingly well. His hip has 95% regrown on his last X-ray (August 2022) it’s the perfect shape and size and fits perfectly into the socket of the joint. He’s recently started playing for a new football team, Woolton Lille, Liverpool
(a sport a few years back he wasn’t allowed to even play) they have welcomed him with open arms and we’re so grateful he can now play at the level he does. Fred plays at least four times a week, runs cross country for the school and he is literally making up for lost time!
To the naked eye it’s hard to tell which side he has Perthes and that’s down to hours of physio, massage, stretching and exercises. We’ve worked as a team since day one. I’ve done his daily exercises, soft tissue release, massage and physio. His dad has worked on his strength with training, teaching him to ride a bike (something he’d never been able to do in case he fell on his hip) he now goes on over 20km bike rides with his dad without complaining of any pain.
The only other thing I’d like to say is Fred himself is amazing. He doesn’t let anything hold him back. He doesn’t suffer any pain at all now but still stretches daily and before he does any form of exercise.
We hope Fred shows other Perthes Warriors out there that there’s light at the end of that very dark tunnel when you’re first diagnosed.
We’re so ridiculously proud of him with how he’s dealt with it and we’ll always be grateful to our amazing family, friends and Dr Perry whom have got us through
Fred’s our hero, our Perthes Warrior.
