Toddler with rare sun ‘allergy’ can now play at home with curtains open
A two-year-old believed to be the only child in the UK with a rare UV sensitivity condition is now able to play at home just like her peers
A toddler with a rare sun ‘allergy’ is now able to play at home with the curtains open for the first time thanks to new UV protection installations.
Listen to this article
Mollie Murray, aged two, is believed to be the only child in the UK with xeroderma pigmentosum (XP), an incurable condition which makes her extremely sensitive to UV light from the sun.
Before UV-proofing her house, the Scottish toddler could only go outside in full protective clothing or at night. Now, she can play like a regular child at home with the curtains open thanks to adding UV-resistant film to her home.
Mollie’s mother Kirsty Campbell, 35, said: “She burns all year round and has burnt in November before.”
Campbell, who is a charge nurse, said: “The only time it’s safe to go outside is in the dark. I want to keep her inside at all times to keep her safe, but we can’t do that – she needs some sort of normality.”
Read more: GSK acquiring firm developing food allergy treatment in £1.6bn deal
The UV-resistant coating was put on the windows at Mollie’s father’s house, and funding for the coating was made possible by The Archie Foundation, a Scottish charity that provides aid to sick children in the area.
The charity's mission statement is “that all children in the regions we support will have equal access to world-class healthcare and bereavement support.”
“I cried for about 20 minutes when I was told the money would come through. Mollie wouldn’t have the same quality of life at her dad’s house without it,” said Campbell.
According to Campbell, Ryan Murray was having to take playground equipment inside for his daughter to play with, so the funding to coat his home gives her the new ability to run around “like a normal child".
Her condition does not just mean that she gets sunburns year-round; it also means that she is 10,000 times more likely to get skin cancer than other children.
The two-year-old also suffered from seizures and severe reflux as a baby.
Ms Campbell and her family have been told that Mollie will likely have neurological impairment and mobility issues in her 40s and 50s, but that she should have a fairly normal childhood.
Mollie’s family are hoping to ensure she has the highest quality of life possible while continuing to keep her safe.
“I have a UV monitor as she can’t just walk into a room. I have to check there is absolutely no UV light there, so there are so many challenges along the way,” Ms Campbell said.
“She is an amazing wee girl and is coping with it so well. She’s very outgoing and friendly, and the fact she’s been in hospital so much means she’s used to seeing different faces.”
The Archie Foundation gifted Mollie’s family £600 to fund UV film for the whole downstairs of her dad’s house and Mollie’s bedroom upstairs, which was installed on July 15.
Rebecca Duncan, business development and fundraising manager for The Archie Foundation in Tayside, said it’s “wonderful” to hear how the charity’s support has helped make a difference for Mollie and her family.
“Caring for a child with complex needs can be incredibly challenging and, at times, isolating, so we’re committed to ensuring families never feel they have to face that journey alone,” Ms Duncan said.
“Mollie has shown remarkable resilience, and we’re proud to have played a small part in helping her experience the joy, opportunities and precious moments that every child deserves.”