My Girl Is Allergic To The Sun

Kate was stunned by her daughter Sophie’s rare diagnosis
  • When Kate Gray’s daughter, Sophie, two, developed a rash across her cheeks, arms, lips and neck, she put it down to eczema.
  • But three years later, blood tests confirmed there was something bigger behind Sophie’s unbearable rashes. 
  • Allergic to sunlight, Sophie dressed in long-sleeved shirts, pants, broad hats, sunglasses and gloves when outside and waited till after the sun went down each day to enjoy time outside.

Here Kate tells her story in her own words.

Jumping over waves as they crashed along the shoreline, my son Lucas, then four, and twins Sophie and Dominic, two, were giggling away.

Together with my hubby Ashley, then 34, we loved spending our weekends having fun in the sun.

When we weren’t splashing around in the water, we were playing a game of backyard cricket.

But after our fun beach day in the summer of 2013, I noticed Sophie scratching her face constantly.

Inspecting my girl closely, I saw little red dots had spread across her cheeks, arms, lips, and neck.

‘I used to get eczema when I was a kid,’ Ashley said when I showed him.

‘Try not to itch too much,’ I told Sophie, keeping an eye on her.

Checking the other kids, they seemed fine.  

‘I used to get eczema when I was a kid.’

Our girl all covered up (Credit: Supplied)

As the night wore on, more bumps kept popping up on Sophie’s body and the itching didn’t stop.

Wanting to soothe her pain, we tried warm baths and wet wraps, but nothing seemed to work.

So we took her to see the dermatologist soon after.

‘It looks like eczema,’ the doctor confirmed, adding there were cortisone creams we could use to soothe the flare-ups.

‘The rash should go down after a few days,’ the doctor said confidently.

Applying the cream over Sophie’s spots, we then dressed her in long sleeves to help prevent her from scratching.

After two or three days of using the cream, the itch disappeared but it took another two weeks for the sores to clear up. 

Having heard saltwater could help ease skin conditions, we continued to spend a lot of time in the water.

The rash kept coming back (Credit: Supplied)

But within a few hours of getting home, Sophie would be covered in the awful rash.

We tried gloves to stop her from scratching, but they aggravated the rash between her fingers.

Sometimes, she’d scratch so much the tiny blisters would pop leaving painful sores behind.

‘Mummy, it hurts,’ Sophie screamed.

We were prescribed topical steroids to help stop the itch, but that was always temporary.

Desperate to find a solution, I researched alternative eczema treatments online.

With our dermatologist’s advice, we tried adding a small amount of bleach to a bath to help reduce the bacteria on the skin.

Though it sounded risky, we were willing to give anything a go.

Thankfully, it didn’t cause any adverse reactions on our girl’s skin.

Sophie wore long-sleeves in the height of summer (Credit: Supplied)

But it didn’t help her heal.

Then in May 2016, when Sophie was five, she had her worst flare-up yet.

After we spent the day at the local national park, Sophie’s rash was the most intense it had ever been.

She was covered from head to toe. As we tried to soothe our girl’s agonising cries, it finally dawned on me.

‘Maybe the sun is causing the rash,’ I said to Ashley.

After videoing Sophie’s outbreak, I took it to her dermatologist at the hospital the next morning.

Concerned, she prescribed oral steroids.

Eight weeks after Sophie had blood tests, we were called back for results.

Sophie and me (Credit: Supplied)

‘Sophie has actinic prurigo,’ her doc said, explaining the rare skin disease meant our girl was allergic to sunlight.

I was racked with guilt.

‘All this time we thought we were helping, we were making it worse!’ I sobbed to Ashley.

While there was no cure, we were taught how to keep our girl safe from the sun by taking extra precautions.

We dressed her in long-sleeved shirts, pants, broad hats, sunglasses and gloves when outside, even in the height of summer.

Waiting till after the sun went down each day, we still enjoyed time outside as a family.

Despite her condition, Sophie was so excited to become a big sister to her little brother Harrison in 2012, followed by sister Peyton, 14 months later.

When Sophie was 11, doctors had some good news.

‘All this time we thought we were helping, we were making it worse!’

Sophie after treatment (Credit: Supplied)

‘We think Sophie would be a good candidate for phototherapy treatment,’ they said.

Using bursts of UV light, doctors hoped the treatment would help harden her skin and temporarily desensitise it to the sun’s UV rays.

Driving 700 kilometres to Adelaide for treatment, Sophie had daily sessions to help build tolerance.

After nine weeks, she was given the green light to return home and enjoy some fun in the sun.

‘What if the treatment didn’t work?’ a nervous Sophie feared.

‘We have to try,’ I encouraged.

We stopped at the shops on the way back and Sophie picked out a new summer wardrobe.

At the beach, I was ecstatic to watch our girl go for a dip in the ocean in normal bathers for the first time in six

Our family (Credit: Supplied)

While the treatment can provide protection for up to a year, the first round wore off for Sophie after just six weeks – and round two lasted three months.

So we revert back to covering up while we wait for her treatment.

But it hasn’t stopped her doing what she loves. Finding her zest for life again, Sophie, now 12, tries to live as normally as possible. Whether she’s playing netball, cricket or swimming with Lucas, now 14, Dominic, 12, Harrison, 11 and Peyton, 10, we can’t keep her indoors for too long, even if she does need to cover up.

We’re grateful to see our special girl smiling again.

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