Fundraiser for brave Castlefin girl Kayleigh Carlin (5)

A brave young Castlefin schoolgirl is the only person in Ireland with a rare condition which makes her extremely sensitive to sunlight.

Five-year-old Kayleigh Carlin has xeroderma pigmentosum (XP), a condition that means her DNA cannot repair the damage from exposure to UV rays.

Kayleigh is the daughter of Adrian and Lorraine Carlin and she starts senior infants at St Mary’s National School in Castlefin on Thursday morning.

Kayleigh must be completely covered with a protective face shield, gloves and wear ultra-violet protective clothing when exposed to UV rays. Every two hours, she has to have factor 50 suncream applied.

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The condition is estimated to affect around one in one million people, but Kayleigh is the only person in Ireland who has been diagnosed.

People with XP are extremely sensitive to radiation from the sun and the condition can lead to a high risk of skin cancer and other medical issues.

Anytime she goes outside, regardless of the weather, Kayleigh has to be covered from head-to-toe.

Kayleigh, accompanied by her Little Ted bear, who also wears UV protective clothing and a mask, simply explained to her classmates: “I’m allergic to sunlight.”

St Mary’s NS, largely through the endeavours of principal Sharon Murray, has had UV blocks installed on each pane of glass. During the last school year, the blinds were down to prevent exposure to sunlight. Four UV-protected outdoor play areas are also being developed at the school.

“There is no words to describe what the school has done,” Kayleigh’s mother, Lorraine, said. “When she comes in, I couldn’t ask for better. When we left Dublin after the diagnosis, I didn’t think Kayleigh would ever be able to go outside.”

The family home has also been kitted out with UV blocks. Kayleigh carries a UV meter, which monitors the UV rays in each building she enters.

The sight of freckles on her face was not initially a worry, but soon it dawned that Kayleigh had a condition. Lesions on her face can become cancerous.

“She is really resilient,” Lorraine said. “She wears her mask and gloves all the time.”

A golf classic will take place this Friday, September 1, at Ballybofey and Stranorlar Golf Club. The golf classic is in aid of Action For XP and St Mary’s National School in Castlefin.

Action For XP is a support group in England who cater for 100 people with the condition and helped provide Kayleigh with a protective mask.

Friday’s fundraiser has been organised as a thank you for generosity and support on behalf of Kayleigh and her parents.

Entry for teams of four costs €100 and a €5 meal voucher is included. Tee sponsors cost €50 and are also still available.

Finn Valley Harvesting have been confirmed as a gold sponsor of the event. McElhinney’s have also gone on board with gold level sponsorship of the first, second and third prizes. Silver and bronze sponsors still up for grabs by contacting Michelle (086-8958874), Shane (083-1087287) or Michael (087-4443696).

B&S Golf Club can be contacted on 074-9131093 for a tee slot.