As usual, I was in two minds writing this journal entry today as I am writing it straight from the heart, which shines a light on my vulnerability as a mother. Secondly, my son is now at that age, where he backs away from unwanted attention. But I feel that I need to document this Perthes journey to show the world just how special this kid is.
Some time ago, I wrote a blog post about my little hero, the story of my sons battle and bravery with bilateral Perthes disease. He was 11 years old back then, just shy of his 12th birthday, we were living in Malaysia, and he had recently been told he would never play football (soccer) again.
Although this might not sound like much to most, it is a big deal to him so let me put this into perspective for you. This kid spent countless hours training so that he could compete in Europe. The team was due to travel to Denmark and Sweden in two weeks to take part in Gothia Cup World Youth tournament. Gothia is the largest youth tournament in the world, so to say it was a big deal, was an understatement.
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BACK IN 2016
When we arrived in Sydney in June of 2016, he had been on crutches for approximately three months by this time, after fracturing his hip in a 2-day soccer tournament in Johor Baru. He spent the entire weekend with a fractured hip, playing an endless amount of games over two day period without one complaint.
By the time we flew home to Sydney to see the Perthes specialist, we had by then exhausted all avenues. His hip was not getting any better; in fact, it was declining with every doctor’s visit we made. We spent time with physio’s, doctors and even took up swimming and horse riding, but nothing seemed to work.
As soon as we saw the surgeon in Sydney, my son was rushed in for emergency surgery. Sometimes as a mother, we need to trust our instincts more often, as I had felt that I was not getting adequate advice from the doctors in Malaysia. All I heard was the same phrases each time I visited the specialist “there is nothing we can do for him” and ” we just have to wait and see” were not sitting well with me, in fact, it only fuelled my desire to push further on for answers.
Little did I know when I wrote that post all those years ago that his recovery would be years in the making and as I sit here four years on, it has been a remarkable journey that makes me even prouder than when I saw this brave little boy way back then.
It is hard to believe that he has spent years of breaking through barriers, overcoming hurdles, and riding the emotional rollercoaster that comes with this journey. I knew as a mother I would never give up on this fight, but I had thought he would at times feel like giving up, but he never did, he never has, and I don’t think he ever will. This kid deserves a cape because he is a real superhero in my eyes.
WHAT IS PERTHES DISEASE?
Legg-Calve-Perthes disease or Perthes for short is a condition found in children; it is when the blood supply to the femoral head of the hip joint is limited, which causes the bone to die. The reason for this is because as it weakens, it starts to lose shape. So when this area begins to heal the femoral head is no longer round, which causes lots of pain and stiffness. It is like trying to place a square peg in a round hole! The earlier the disease is detected, the greater chance of recovery.
A few facts about Perthes –
–Although Perthes can affect children of any age, the most common ages are between 4 and 10 years old. If detected after the age of 12, the less chance of recovery, but no two cases are the same, so the prognosis given is always blurred, there are no answers set in stone.
– The chance of having Perthes for boys is about four times more likely than in girls.
– This disease is known as a caucasian disease which made the treatment difficult in Asia.
– Children who have had Perthes disease are more likely to develop hip arthritis and end up having hip replacements at a young age.
THE ROAD TO RECOVERY
After spending the entire year either on crutches or in a wheelchair, he was finally able to walk unassisted for the first time in 2017. The biggest issue with this disease is that from the outset (apart from a limp) there are no telltale signs.
The first year was tough because he looked fine, and he felt relatively fine in comparison to previous years, but he still was not allowed to play any sport. Imagine telling your son, who lives and breathes sport that he needs to wait another year—no running around at lunchtime, no-touch rugby after school, no contact sport at all.
Imagine starting a new school, in a new country, without the possibility of interacting like all the other boys. Tough gig, but he never once complained, as a mother it was tough to watch.
The second-year after the surgeon’s stamp of approval found him back playing another of his favourite sports, rugby where he once dominated the rugby pitch, this kid was a mear shadow of his former self. His body was not the same as it was two years before; this once muscley body was frail in comparison.
His confidence had also taken a beating, with the worry of his hips and the stiffness in his joints made it hard to play. He was also a lot smaller than most of the kids in his year (a common trait of Perthes sufferers). I secretly wondered if rugby was a good idea.
You could see after every game; he was in pain. He would spend the afternoon in ice baths and then spend time on a roller to relieve some of the aches and pains around his hip area. But he never once mentioned quitting or asking for pain killers of any sort. He was determined to play at all costs, saying that the pain was worth it.
Last year saw the surgeon happy with his results and has given him the green light and pencilled in another appointment for two years! The best news we had heard in three years so far, with less pain in his hips, this was the beginning we were all praying for back in 2016.
THE LONG JOURNEY OF PERTHES
So, here we are in 2020, with so many new beginnings and strange circumstances. This kid not only started a new school during a pandemic, but he made the A’s in rugby and started his first season in rugby league. Can I say how proud I am? not just that his team won the grand final, but both his confidence and mental strength has come leaps and bounds.
I can not thank the people in his life this year that have helped him grow both as a person and as a young gentleman. As I write this, my eyes once more, well up with tears, like they did when I wrote that blog all those years ago. To see this one timid child turn into a solid young man, you wouldn’t believe it is the same person.
I can finally say “he is back” he has reignited that spark once again, he has overcome obstacles that most will never have to endure in a lifetime. He has done all this, without complaint, without questioning “why me” and without quitting. This kid has taught me what resilience is, what perseverance means and most of all, he has been an excellent example of what being humble is all about.
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