Sophie Gray has been in and out of hospital her entire life.
Her family also live 650km from Adelaide, or roughly an eight-hour car trip, which has made getting to and from appointments difficult, but Ronald McDonald House Charities (RMHC) has helped keep kids like Sophie with their families.
“It’s our home away from home,” Sophie’s mother Kate told 7NEWS.com.au ahead of McHappy Day on November 19.
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When Sophie, now 11, was just three weeks old she was diagnosed with a Respiratory Syncytial Virus Infection (RSV) - a highly contagious virus that infects the airways and lungs.
“It was touch and go for a while,” her mother said.
A month later, as Sophie recovered from the virus, doctors diagnosed her with central sleep apnoea - a condition where breathing repeatedly stops during sleep.
To address this, Sophie was put on oxygen 24 hours a day and over time that was reduced to only while she was sleeping.
She only stopped using her oxygen machine four weeks ago.
But Sophie’s sleep apnoea was just the beginning of her health journey.
When Sophie was a toddler, Kate noticed something was wrong with her skin.
“She kept getting really bad eczema, and we thought that we’d take her to the beach and try and do the right thing, put her in the saltwater to try and help, but we didn’t realize that was making it worse,” she said.
When she was five, the family went to the National Park and when they returned, she had broken out in a rash of painful, tiny blisters.
“It was absolutely horrendous,” Kate said.
‘Allergic to the sun’
After taking a video of the severe rash and showing it to a dermatologist, Sophie was diagnosed with a rare skin condition - actinic prurigo (AP).
For her, it meant she could no longer go out in the sun without having her legs and arms fully covered.
“She’s sensitive ... to the UV rays, so she’d go out and put sunscreen on and not get burnt but still get a rash,” Kate said.
“Sometimes it will sting, burn,” Sophie told 7NEWS.com.au.
“One or two bumps come up then ... you have to scratch them (because it’s itchy). You keep scratching them and they get bigger and yuckier and (it) hurts more.”
The 11-year-old said it was initially a shock when she found out she had the rare condition.
“I didn’t know what it meant then,” she said. “There’s no cure. I have to live with this forever.”
Thankfully, a new treatment has become available.
Sophie has only recently returned from Adelaide after having tried phototherapy for the first time, which Kate describes as a “skin hardening” treatment to desensitise her to UV rays.
It’s not a permanent solution, but so far it’s been a success.
“It’s given Sophie the ability to wear a dress or go to the beach in her bathers, or wear shorts or a t-shirt, something .... we didn’t think would be possible,” Kate said.
“We have taken her to the beach and just to watch her run into the ocean in a normal pair of bathers was something we didn’t think we’d ever see.”
A home away from home
The Ronald McDonald House in Adelaide not only acts as convenient accommodation for the Gray family but has also been a place to form connections with other families in similar situations.
“It’s so good to be able to connect to people, I mean we’ve met people from Mount Gambier ... Darwin, all over Australia,” Kate said.
“We’re all in the same boat, we’re away from home, away from family and friends.
“Some of the volunteers knew Sophie when she was eight weeks old, as a little baby, and (they’ve) watched all our kids grow up.”
Kate and Sophie have both called on Australians to get involved this McHappy Day to ensure families just like theirs can continue to stay together.
“All the money goes towards helping families like my family be together when we’re going through some hard times,” Kate said.
With the phototherapy treatment helping Sophie regain a sense of normalcy, the 11-year-old has a bright future ahead.
“I want to become a doctor,” she said. “I want to help people in the same boat.”
For more information on McHappy Day and how to donate, visit www.mchappyday.org.au.
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