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Olly's story - A baby's road to recovery from a rare immune disorder

Olly was born with HLH, a very rare and life-threatening immune disorder.  In this blog, Olly's mum shares his incredible story. 

 

Olly’s diagnosis with HLH

Olly was born on the 25th July 2012 – and by the time he was four weeks old, he had a temperature, and he was regularly vomiting.

‘He’s just a sickly baby,’ was the doctors’ consensus.

Then, one Saturday night, he got pretty seriously ill. My mother’s intuition kicked in and I drove him to A & E. They thought it might be meningitis, so they put him on antibiotics.

Two days later, Olly was at Sick Kids (The Royal Hospital for Sick Children) in Edinburgh, and going downhill fast. They were giving him platelet transfusions, but the oncology experts just didn’t know what was wrong. He seemed to be leukaemic, but not entirely – and all the while, he was losing his bodily functions, one by one.

Finally, my husband and I heard from a consultant down in Birmingham, who thought he knew what might be wrong. There was no time to waste – so Olly was taken to the hospital by air ambulance.

The consultant suspected that Olly might have haemophagocytic lymphohistiocytosis, or HLH. It’s a disorder that affects the immune system, severely preventing your body from protecting itself against infections. It’s rare, too – occurring in about one in a million children, although the true, undiagnosed number could be higher.

A bone marrow biopsy was the only way to be sure. The problem was, Olly was already so sick that he wouldn’t survive a general anaesthetic.

The doctors told us that they needed parental permission to give our baby sufficient pain relief, without putting him under.

In the end, my husband held Olly in his arms while they performed the procedure.

Afterwards, the diagnosis was confirmed – it was HLH.

 

Olly’s bone marrow transplant

From then, things moved quickly; Olly started on his first round of chemotherapy, while we moved back up to Edinburgh. We had two other small children to look after, so Birmingham had been a really rough experience!

Olly went into remission – but before we could celebrate, or even leave the hospital, his condition returned. We were told that his best hope of survival was a bone marrow transplant.

Olly in hospital, having received a dose of chemotherapy

By this time, he’d only been in the world for five or six months. He couldn’t eat, not even through a tube – he had to take his food directly into his veins, since the chemotherapy had wrecked his insides.

Then the doctors came back to us with some incredible news.

Anthony Nolan had been searching for a matching stem cell donor for Olly on their register. And they’d come back with 70 potential matches.

70 matches! They said they’d never seen anything like it.

Out of those 70, one donor was chosen – and on 1 March, 2013, after another round of chemotherapy, Olly had his stem cell transplant.

Olly, on Day 3 post-transplant

 

Olly’s lifesaving donor

Since then, my son’s had an odd few infections.

After so many steroids, his body no longer produces cortisol (a ‘stress hormone’ that regulates the body in response to pressure or pain), so he needs daily injections – it also makes everything a bit more stressful when he falls off the trampoline!

He missed out on a lot of his first steps, too. It wasn’t until he was two years old that he started really walking and talking.

But now, at age three, he’s the happiest little boy ever: so smiley and happy, a football lover, and always sociable, too! (A first year spent among so many doctors and nurses probably helped with that.)

Olly, playing in the garden

We’ve had our own landmarks, as well. Last year, my husband and his brother-in-law cycled from John O’Groats to Land’s End to raise money for Anthony Nolan.

And in March 2014, on the first anniversary of the transplant, we received an anonymous card from Olly’s donor.

Now, more than two years on, I’m ready to reach out to him.

(I’m pretty sure it’s a him, anyway – since young men tend to make the best donors, it’s a good bet that the first choice out of 70 is probably male. I also did spend a bit of sleuthing time analysing the writing in that anonymous card…)

I haven’t thought about what I’d say to him yet. I think it’d probably be the same thing I’d say to everyone who’s on the Anthony Nolan register.

Just a massive, huge thank you, because Olly wouldn’t be here without you.

And I’d probably give him a great big hug, as well!

Olly today, busy crafting

If your child is having a bone marrow or stem cell transplant  you can download our guide for parents here. You can also join our Transplant Community to connect with other patients and share experiences and support.

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