Proud mum hails bravery of Clipstone schoolgirl who is allergic to the sun

A proud Clipstone mum has hailed the bravery of her 11-year-old daughter who has battled a rare skin cancer for the majority of her life.

Friday, 26th March 2021, 7:36 pm

Courageous Livvy Holden suffers from a genetic disorder called Xeroderma Pigmentosum (XP) – which affects just 100 people in Britain – and means she is allergic to the sun or UV light.

The youngster, a talented ice skater, has to wear a special visor, hood and gloves during the day and must also apply sun cream every two hours.

Livvy was diagnosed with the cancer when she was four and has undergone 15 operations to remove skin cancers on her nose, face and body.

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Courageous Livvy Holden suffers from a genetic disorder called Xeroderma Pigmentosum (XP) – which affects just 100 people in Britain

She also has to attend St Thomas’s Hospital in London every six months for check-ups.

Her mum Jodie said: “At times it’s been tough. Skin cancer after skin cancer. She once asked, mum am I going to die?

"It’s heartbreaking to hear your child ask that. She has been so resilient and coped so well.”

But despite her condition, Livvy leads an otherwise normal life and during the pandemic has practiced skating using special ‘off-ice’ skates in Clipstone Co-op car park due to Covid-19 restrictions forcing the closure of the Lammas Leisure Centre at Sutton.

Jodie, Olivia, Eddie and Phil Holden.

“She goes out freely at night. She loves ice skating, dancing, karate. I think someday she’ll probably be a figure skater,” said Jodie. “She has the determination.”

And Jodie, who ran the London Marathon in 2019 for the XP Support Group, says she wants to raise awareness of the rare illness.

“She gets stared at in her visor, people make comments, often it’s adults, kids aren’t bad, they stare and walk on,” she said.

"She’s had grown men saying things to her, passing comments like ‘space woman’ and ‘beehive keeper’.

"She was in Mansfield Market Place with her dad skating. Luckily he was there to stick up for her, but Mansfield isn’t the worse place it’s happened.

"She’s learned to keep her head down, ears closed, ignore comments, but it is hurtful when she’s been through so much.

"I’m so proud of her, the way she deals with it all. I want to try and raise awareness of XP, and educate people to understand what it is like for her and people with XP.”

For information about XP, go to https://xpsupportgroup.org.uk/who-we-are/.