This week we are especially grateful to have a guest blog from Leanne Farmer of Pedal Through Perthes. The Farmer family travels the world actively raising awareness and funds for Perthes. You can find them sailing, biking, exploring, and teaching. Check out all the Farmer’s adventures Pedalthroughperthes.org!
Jack was 7 years old when he was diagnosed with Perthes in his left hip. We were very confused and didn’t understand what it really meant. When we started researching Perthes we were devastated. Just as for all young people with Perthes, sport and all physical activity for Jack had to stop immediately. I teach Phys Ed in a through school, teaching sports to kids. I couldn’t accept that my son was unable to run around. Seeing other 7 year olds running freely in the mornings and at recess just broke my heart. Jack meanwhile, adapted quickly. He had a pair of yellow crutches that his friends all wanted to try out and of course, they were everything apart from crutches! Light sabers, swords, telescopes.. it was a different kind of fun for him.
He was still complaining of pain, so after an MRI, it became clear that more of the femoral head had collapsed than we first thought. 20 days after diagnosis Jack had a femoral osteotomy. Our surgeon, Dr Liu used a Japanese technique, and consequently his leg length difference is now less than 0.5cm. Jack had 2 weeks off school but Skyping his class everyday made his recovery time less isolating. We got him a ‘sports-style’ wheelchair and a friend found a ‘Radio Flyer Cyclone’ ride on toy. This changed everything. Jack had his independence back and he was able to ‘keep up’ with his friends and play in the playground. The school let him use it in PE lessons and all the other kids loved it.
I was still struggling with Jack not able to play rugby, compete in Duathlons which he loved and BMX, skateboard etc.. all the things he loved and was getting good at. Above all, we loved to cycle as a family. We enjoyed cycling holidays in Asia and loved to cycle in UK when we visited. His hero, Sir Chris Hoy had brought out a range of kids bikes, and Jack had earned a new bike only a year before. It now sat in a corner collecting dust and a sad reminder of what had been.
3 months after diagnosis, I became determined that we would continue to cycle. After a lot of let downs, I managed to buy a kids’ handcycle from a company in Germany called Pro Activ. We picked it up in the UK in the summer of 2017 and got invited to cycle into London with Rob Groves when he was handcycling 2500 miles round the English and Welsh coast to raise awareness for plastic waste in the oceans. This fueled our determination that Jack would now ‘Pedal Through Perthes’ until he is healed. Jack thought of the name, ‘through’ Perthes instead of ‘for’ Perthes, as he said, ‘mum, dad, I’ll cycle through Perthes as it’s not forever, we’ll Pedal our way through it!’
We set up Just Giving pages, made T shirts to sell by Tsunami Sport, based in Hong Kong and started to write a blog and manage a website.
When we returned to Hong Kong after the summer holidays, we organized a charity cycle event at our school on Nov 11th. More than 250 people came and they cycled, skateboarded, scootered and rollerbladed the 4km route followed by music, bbq, raffle and trying Jack’s handcycle. We raised over 50,000 HKD which went to Perthes Association.
We are now attempting to handcycle the Austrian part of the Danube in 2 weeks. We are currently just over half way and we are on target! Hills are hard, people staring at him wondering why he sitting down is weird, but we’re proudly flying our Pedal Through Perthes flag on the handcycle.
We hope that other kids recently diagnosed can get hope by seeing Jack keep active through this condition. From the start we were determined to find physical activities for Jack. We swam 3-4 times per week, played on his Radio Flyer and of course, cycled his handbike.
We are taking time out from school and jobs just now, leaving Hong Kong and returning to UK. We decided to travel overland from Asia to Europe. We’re having adventures that Jack is physically able to do and giving presentations to schools about Perthes. Our most recent was at The International school of Ulaanbaatar in Mongolia. We feel it’s so important to raise awareness for Perthes, being so rare and so misunderstood.
As a mum I still struggle with it. I still feel ‘angry’ at Perthes for changing our lives and taking away Jack’s childhood, but our son, now age 9 has taught my husband and I so much about resilience and positivity. Jack has rarely been down during the last 2 years and has only ever thrown himself into his ‘different’ active lifestyle.
I admire these Perthes Kids.. they are tough and when this is all over, they will come out stronger and more determined than ever.