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Olivia Holden: Night garden for XP girl 'allergic to sun' Olivia Holden: Night garden for XP girl 'allergic to sun'
(about 4 hours later)
A girl with a rare condition that makes sun exposure highly dangerous can finally play outside - after fundraising to create a night garden.A girl with a rare condition that makes sun exposure highly dangerous can finally play outside - after fundraising to create a night garden.
Olivia Holden's skin is extremely sensitive to UV rays, and she is about to have her ninth operation to remove skin cancer in two years.Olivia Holden's skin is extremely sensitive to UV rays, and she is about to have her ninth operation to remove skin cancer in two years.
Her local community raised £5,000 for the seven-year-old's school to be adapted and to create the garden.Her local community raised £5,000 for the seven-year-old's school to be adapted and to create the garden.
Her parents, Jodie and Phil Holden said it has changed her life.Her parents, Jodie and Phil Holden said it has changed her life.
"She's just a lot happier in herself because she can come out and it's safe," said Mrs Holden."She's just a lot happier in herself because she can come out and it's safe," said Mrs Holden.
"The fact that she can come out without a mask on, without her shoes on, has made such a change it's unbelievable.""The fact that she can come out without a mask on, without her shoes on, has made such a change it's unbelievable."
Olivia, from Clipstone, Nottinghamshire was diagnosed with xeroderma pigmentosum two years ago, and since then has avoided the sun.Olivia, from Clipstone, Nottinghamshire was diagnosed with xeroderma pigmentosum two years ago, and since then has avoided the sun.
Xeroderma pigmentosum (XP)Xeroderma pigmentosum (XP)
XP is a rare genetic skin condition for which there is no cure.XP is a rare genetic skin condition for which there is no cure.
It is characterized by an extreme sensitivity to ultraviolet (UV) rays.It is characterized by an extreme sensitivity to ultraviolet (UV) rays.
UV light damages the DNA in the skin and eyes of people with XP and they are unable to repair this damage.UV light damages the DNA in the skin and eyes of people with XP and they are unable to repair this damage.
This damage presents itself as severe sunburn, abnormal freckles and sometimes eye problems.This damage presents itself as severe sunburn, abnormal freckles and sometimes eye problems.
The damage to the DNA builds up and causes cancerous cell changes, meaning that people with XP are 1,000 times more likely to develop skin cancer. The damage to the DNA builds up and causes cancerous cell changes, meaning that people with XP are 10,000 times more likely to develop skin cancer.
The only safe time to be outside is when it is dark. Even when indoors, people with XP can be harmed by daylight coming through windows and from the UV light that is emitted by many light bulbs.The only safe time to be outside is when it is dark. Even when indoors, people with XP can be harmed by daylight coming through windows and from the UV light that is emitted by many light bulbs.
Source: XP Support GroupSource: XP Support Group
Outside her home, she has to wear several layers of clothing, a special visor over her face and sun cream is reapplied every two hours.Outside her home, she has to wear several layers of clothing, a special visor over her face and sun cream is reapplied every two hours.
The garden cost about £1,500, and UV filters have been installed on windows at her school using the rest of the money.The garden cost about £1,500, and UV filters have been installed on windows at her school using the rest of the money.
Fundraisers included one of Olivia's teachers, who raised about £600 by running the New York City Marathon.Fundraisers included one of Olivia's teachers, who raised about £600 by running the New York City Marathon.
A concert also raised more than £1,000.A concert also raised more than £1,000.
Olivia's favourite bit of the garden is the hammock where the family - including nine-year-old brother Eddie - enjoy stargazing.Olivia's favourite bit of the garden is the hammock where the family - including nine-year-old brother Eddie - enjoy stargazing.
"We come out most nights because it's really bright and we can get the blankets and it's snuggly. I love it," she said."We come out most nights because it's really bright and we can get the blankets and it's snuggly. I love it," she said.