NO AMOUNT OF UV IS SAFE FOR THESE TWO GIRLS!
Please help the Walker family to keep their gorgeous girls safe. Nick and Yvette have three children - Quinlan (11), Amielle (8) and Taya (3). Amielle and Taya have recently been diagnosed with an extremely rare genetic disorder called Xeroderma Pigmentosum (Type D), or XPD for short. XP affects approximately 1 in 1,000,000 people worldwide and is incurable. This condition means that Amielle's and Taya's bodies are missing a vital part of their DNA which repairs damaged skin cells after exposure to UV radiation in sunlight. Their damaged skin cannot repair the way other people’s skin does. As this damage is not repaired it builds up over time and the cells will either die or mutate into skin cancers.
PLEASE DONATE TO BUILD THESE GIRLS A BACKYARD THAT IS SAFE FROM UV
People with XP:
- Are 10,000 times more likely to get skin cancer than other people (and often from an early age);
- Often battle other cancers due to mutated skin cells spreading in their bodies;
- May have significantly reduced life expectancy;
- May experience other complications including blindness, deafness, loss of cognitive function, and brain damage (around 20% of XP patients).
What happens if they are not properly protected from UV in sunlight?
UV radiation is emitted everyday by the sun from the moment it rises all the way until it sets: rain, hail or shine. Because no amount of UV exposure is safe for the girls, it means that these precious children cannot go outside in the daytime without 100% UV protective clothing on. Without UV protective clothing, even minimal exposure to sunlight can cause severe blistering burns, with the burns progressively getting worse over the following days. Burns can take up to two weeks to heal completely.
Amielle's first burn was at just three and a half months old (first picture below) after spending a short time with a mum’s group in the shade at a local playground. The following photos show some of her more serious burns before she was diagnosed with XP at seven and a half years old.
Amielle and Taya have both suffered from episodes of Photophobia which is when sunlight burns the cornea of the eye. This results in the girls having to stay in a pitch-black room for 2-3 days while their eyes begin to heal. Even the smallest amount of light during one of these episodes is extremely painful for them. Taya ended up in hospital for 5 days with an episode from not wearing her sunglasses at a water park for 20 mins on a cloudy day (she had a hat, suncream/zinc and a full bodysuit swimsuit on).
What will the funds raised be used for?
Nick and Yvette are doing everything they can to keep their girls safe, but it has been a challenge as the family income has been hit hard by COVID-19. Since the diagnosis every aspect of their lives has been turned upside down! Nick and Yvette have had to install UV blocking window tint to every pane of glass in their house, install window blinds or curtains, install UV blocking film to their car windows. They have also worked hard together with Amielle's school and Taya's daycare to ensure they are safe there too. They have had to source and buy specialist UV blocking protective clothing from overseas suppliers such as pants, tops, gloves, hats, sunglasses, swimwear, and Yvette has designed and made UV safe "hoods" to protect the girls faces and necks when outside. The plastic used for their hoods can only be sourced from a company in Germany who produce a unique 100% UV safe plastic for people with XP. To be outside during the day the girls need to have every inch of skin covered.
As Amielle and Taya grow older there will be ongoing costs for clothing which will have to be replaced regularly as the girls grow, and as the UV protection diminishes with washing. Specialist low chemical suncreams and zinc will also be purchased on an ongoing basis as the girls have to have suncream applied several times a day, every day, all year round.
Nick and Yvette have also had to rethink how to do life in Australia with the harsh UV conditions as it impacts sporting options, playground options, eating out, holidays, party invites etc. Activities during the day require them to wear full protective gear which is unbearably hot in many months of the year in Australia. A carefree play down at their local beach, backyard, or playground (with no protective gear on) now has to be done at night. This is why children with XP are often referred to as "Moon Children" or "Children of the Night".
The dream of this family is to build a UV safe cover over their entire back garden to make it safe for the girls to play outside at anytime day or night, without having to worry about the damaging impact of UV while in their own home. They would also love to extend and convert their garage to a kids gym and breakout space where the girls can safely play, exercise, learn and grow. This would also be an inviting space where their friends will want to come and play in. This social element of their development is critical because their restricted lifestyle can be isolating.
Funding will also be used for life long ongoing non-reimbursable medical expenses like their 3 monthly skin checks, annual sight and hearing check ups, along with other ongoing specialist medical appointments.
These two girls have been burdened with an incurable life-long condition which will impact their physical, social and emotional wellbeing, and also limit their ability to just get out and about and play like any other children. Please help us in any way you can. Any donation no matter how big or small will enable us to enhance these two precious lives in this family.
On behalf of Nick, Yvette, Quinlan, Amielle & Taya. Thank You!
https://omny.fm/shows/the-drive-program/drive-with-jim-wilson-full-show-july-8 (1 hour 41 mins in)
If you’d like more information on what the XP Life looks like check out these videos:
If you’d like more facts about XP here are some links: