Jordi’s Story

Perthes Doesn’t Stop Me – Jordi’s Story

My name is Jordi. I’m four years old; I love football, I love being outside, and I’m a bit cheeky, a bit boisterous, and probably quite stubborn!

Before I had Perthes, I was always on the go. I loved soft play, bouncy castles, climbing, running, jumping and, most of all, football. I was good at football for my age and I loved playing.

Then Mum and Dad started to notice that something wasn’t right.

I had a sore leg and I started limping. At first, we all thought I had hurt myself. We went to the GP twice and were told it was probably just growing pains.

But it wasn’t.

It took around six months before I was diagnosed with Legg-Calvé-Perthes disease.

Mum says she didn’t really know what Perthes was when I was diagnosed. She was bewildered and, like lots of parents probably do, she went home and googled it. She says she didn’t like what she saw.

I think I’ve handled it better than everyone thought I would.

I know that something is happening with my hip because Mum and Dad show me my X-rays and explain them to me. I’m actually pretty good at understanding it. I know there are things I shouldn’t do, and I know that sometimes my leg gets sore and tired.

I also know that I’m four.

So sometimes I still do them anyway!

I’ll tell Mum and Dad that I’m fine and that I’ll be sore tomorrow instead. I’m stubborn like that.

Life is a little bit different

Perthes has changed some things for me.

I get sore and tired quite easily, especially if I’ve been walking for a long time. When I’ve had enough, I tell Mum or Dad that it’s time to stop or that I need to be carried. We have buggies in different places and I’m actually pretty good at asking for one when I need it.

We have had to limit things like playgrounds because Mum and Dad know that some activities aren’t good for my hip. But they also don’t want Perthes to take away all the things that make me happy, so we take things day by day.

I shouldn’t really run, but I’m four — so I run!

Football had to stop completely for a while, which was hard. Now I sometimes get to have a little kick about because Mum and Dad think my happiness and mental health are important too. I don’t do organised football training anymore, but I still love the game.

We’ve found new things to enjoy too.

I love my bike and my stunt scooter. After I was diagnosed, Dad made it his mission to get me riding a bike without stabilisers. Within a couple of weeks, I was riding independently.

I’m only four, but I’m already pretty good!

Days out look a little different for us now. We do more cycling and scooting, and holidays are brilliant because I can spend lots of time in the pool.

And my nursery has been amazing.  I Love my teachers, especially Miss Stockman.  Miss Stockman has been really looking after me when I’m at nursery and I know this makes my mum happy, because she worries – a lot!

The nursery knows everything about my Perthes and what I can and can’t do. They look after me, listen to me and have been there for me and my family every step of the way. They have made what could have been a much harder journey feel so much more manageable.

I don’t give up easily

Mum says I’m very resilient.

Sometimes that’s a good thing and sometimes the worry probably drives her mad!

I push through pain because I want to keep going, even though sometimes I pay for it afterwards.

One day, after we hadn’t been to soft play for around six months, I kept asking Mum if we could go. Eventually she took me and asked me not to jump or bounce.

I was so happy.

I wanted to do everything.

By the end, even climbing the steps to the big slide was becoming difficult. Mum watched me side-step and then drag myself up the high steps.

I was sore, but I kept going.

The next day I was sore, but Mum says she could see how happy I’d been.

So, we’ve booked to go again soon!

Because Perthes is important, but so is being a happy four-year-old.

My big brother Kurtis

 Kurtis is one of my best friends.

We also like fighting with each other!

He’s a gentle giant and I’m small and wild, but we are both each other’s biggest protectors.

Kurtis looks after me. He waits for me, carries me when I need it and knows when I’m getting sore. Sometimes he’ll tell Mum and Dad that I need a rest before I even say it myself.

He also comes to my appointments and listens to what the doctors say.

I’m very lucky to have all my brothers and sisters.

The Tough Mudder

 When we decided to do the Kids’ Tough Mudder, we decided together that it would be something exciting for me to try.

Mum wanted it to be a challenge that I could achieve for myself, with Daddy and Kurtis beside me.

When we arrived, I didn’t really know what was going to happen.

Then I saw the course.

I was very excited… although maybe a little bit unsure too!

The running was tiring for my leg, but I didn’t stop.

I just kept going.

And having Kurtis there definitely helped because I had to keep chasing my big brother!

There were tough bits, but I didn’t give up.

The bit that made Mum and Dad most proud was seeing me and Kurtis crawling through the water just before the finish line.

We did it together.

When I finished, I was so proud of my medal.

It was nearly bigger than me!

I don’t think I really understood that I’d just done something particularly difficult. I was just having fun and living my best life.

That’s probably the best way to describe me.

Turning something difficult into something positive

 We decided to fundraise because Perthes is something that few people know about.

It’s rare, but it can have a huge impact on children and their families.

We wanted to raise awareness, help other families, and support charities like Steps and the Perthes Kids Foundation that understand what families like ours are going through.

Together, we raised nearly £1,100.

I’m only four, but I hope that by doing something like the Tough Mudder and fundraising, I can help other children and families who might be starting the same journey.

Something difficult doesn’t always have to stay something negative.

Sometimes you can turn it into something positive.

To another family starting this journey

 If another mum or dad has just been told that their child has Perthes, Mum would tell them not to panic.  She knows that’s easier said than done.

She says: Take each day as it comes.  There is so much to learn and so much to think about when you’re first diagnosed, but worrying about everything all at once won’t make it disappear.

Look after your child’s mental health as much as their physical health. Let them still be a child. Take things day by day and don’t overthink everything until you actually need to.

It’s a process. And you’ll learn as you go.

 I’m Jordi

I’m cheeky.

I’m boisterous.

I’m loving.

I’m kind.

I’m characterful.

And yes, I have Perthes.

But if you ask me what that means for me, I already know my answer……………….

It is not going to stop me or change me.