The mother of a little girl who is allergic to the sun has revealed what life is like with the debilitating condition.
Sophie Gray was just eight weeks old when she was diagnosed with sleep apnea and has been on oxygen since she was born.
The now 11-year-old has just been able to go without oxygen the past three weeks.
In 2016, Sophie, then just five, developed a skin condition which her mom Kate thought was like eczema.
The family thought taking Sophie to the beach in the salt water would be a relief for her but they realized this was not the case as the youngster’s rash came up in tiny blisters.
“She [Sophie] was diagnosed with actinic prurigo which is an allergy to UV,” Kate said.
“She’s basically allergic to the sun.”
While there is no cure for actinic prurigo, the condition can be managed. Sophie is now being treated with phototherapy, a remedy designed to harden the skin and desensitize it to the sun’s rays.
Charity Ronald McDonald House (RMHC) has helped the family financially and given them accommodation.
“We’ve been here for eight weeks and haven’t had to worry about paying for accommodation,” Kate said.
“And we’ve been provided with so many different things while we’ve been here, opportunities and dinner programs, excursions, so many different things.
“Just the weight of having to worry about where we’re going to stay is there, it’s taken away.
“That’s the main reason is we’ve got a place to stay that’s close to our treatment and we don’t have to worry about financially paying for accommodation every week.
Kate added: “We have made many friends from RMHC which has made a terrible time a wonderful time, they have had some great times in the house and made some amazing memories, Christmas dinners, visits from the miniature horses, zoo passes, and the therapy dogs that visit.
“It’s our home away from home, we feel like we are arriving at our holiday house when we arrive.”
RMHC is an independent charity that helps over 46,000 seriously ill or injured children and their families each year.
Additionally, The Ronald McDonald Family Retreat provides families with seriously ill children a week’s free accommodation at one of five Ronald McDonald Family Retreats across Australia, enabling them to reconnect and enjoy a holiday when they most need it.
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