Real Life

Real life: My boy is allergic to the sun

He'll cook like a sausage!

Leesa Pennicott, 37, from Warranwood, Vic, shares her true life story:

I watched as my two boys ran outside to play with their new puppy.

A few minutes later, Harrison, six, was back.

“I was starting to cook like a sausage!” he complained, as I got him some cream.

Harrison had been perfectly healthy until a few months before his fourth birthday, when he started losing weight.

“My hands hurt,” he said, cracking his tiny knuckles.

He cried constantly and stopped playing with his big brother, Miller.

“Seems like a behavioural issue,” the doctor said.

But he’d been such a bubbly, active toddler, I knew it was more.

Over the next few months, his body became inflamed.

Harrison’s hands, feet and even his eyeballs were swollen.

The doctor sent him for scans and he was eventually diagnosed with DPM, a rare form of scleroderma, a chronic autoimmune disease causing tissue to thicken and harden.

It also meant his immune system couldn’t fight off infections.

He was the youngest in the country with it.

“I’m afraid, there’s no cure,” the doctor said, telling us we’d need to manage Harrison’s symptoms with steroid creams, bandages and immunosuppressive drugs.

Those words rang in my head as I cradled Harrison.

Researching at home, I read that the oldest living person with scleroderma was 36.

It broke my heart to realise my boy’s life would be cut short.

Since his diagnosis, we’ve been undergoing medical trials to stop his condition from getting worse.

He can’t play sport because his skin is so tight his hands split and he can’t swim due to the risk of infection.

If he’s out in the sun for too long, he literally starts to cook.

Recently, we had to rush him to the hospital with a knee infection that could have proved fatal.

Unfortunately, there’s no government funding for research into this disease so everything we’re doing is experimental.

By sharing Harrison’s story, I hope to educate people about these rare, life threatening conditions.

My boy deserves every chance for a cure.

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