She went to school inside a sleeping bag. Her mother drove. On arrival, and safely indoors, the sleeping bag came off and the school took over.
Wherever she moved inside the Taconic Hills building the windows along her route were shaded, fluorescent lighting changed to incandescent and even some vending machine lighting was blocked out.
All of these precautions were necessary because even a fleeting exposure to sunlight or even fluorescent lights would blister Katie Mahar’s skin causing third degree burns.
Katie suffers from Xeroderma Pigmentosum (XP), an extremely rare condition that causes life-threatening ultra-sensitivity to UV rays.
But skin sensitivity is not the only symptom of XP or even the worst. The UV rays attack on the cellular level, damaging organs and causing rare skin and eye cancers so people with XP rarely survive childhood. Katie, who is now deaf and nearly blind, is at age 29 the oldest XP sufferer in the world who has not yet been afflicted by related cancers.
Those with XP belong to a very exclusive club- there are only about one in a million of them scattered throughout the world. As you can imagine, they have few if any friends. When the neighborhood kids are playing in the summer sun, the XP child stays indoors. For a youngster, the isolation may be the worst part.
That’s why in 1995, Katie’s parents Caren and Dan Mahar created Camp Sundown in Craryville, NY. It is the only camp in the world that caters to children with XP and their families. Like other sleepover camps, there are campfires and marshmallow roasts and sing-alongs and kickball games, but here, all activities are enjoyed at night. It is the only time each year that these kids can run and play outdoors with others “just like them”.
And because of the financial strain that XP can put on families, the Mahars welcome everyone to Camp Sundown free of charge.
Sunday October 24th, there will be a very cool fundraiser at Copake Country Club to raise money for Camp Sundown- The 2021 Camp Sundown Golf Ball Drop. Here’s how it works- you buy a numbered golf ball for $25 either online or at the event. Then at 2:00 pm a helicopter will drop the balls onto a makeshift “green ” on the first fairway. The first balls to drop into the holes win valuable prizes. There will also be raffles to reward other number holders.
You needn’t be present, but wouldn’t you want to be? See you there!
For more information about Camp Sundown or the Golf Ball Drop call Caren@518-929-2174 or email at firstname.lastname@example.org.
To buy a ball online go to: https://www.xps.org/.
Camp Sundown 14th Annual Golf Classic
The Camp Sundown 14th Annual Golf Classic will be held Friday, August 6, 2021 at Copake Country Club, 44 Golf Course Road, Craryville, NY 12521.
The entry fee for the four-person scramble format tournament is $100 per person which includes green fees, cart, lunch, cocktail hour, dinner, music and prizes.
There is a dinner-only option for $35.
On-course contests include longest drive and closest to the pin on all par three holes.
Send checks to : Robert Preusser, 790 Rt 23, Craryville, NY 12521.
9:30 am Sign in, continental breakfast
10:30 am Shot gun start
Lunch, snacks and beverages at the turn
4:30 pm Cocktail hour
Dinner, awards and music at Churchtown Fire House
For more information call:
Frank Z. at (518) 755-2626
Caren M. at (518) 929-2174
There are still sponsorship opportunities for $50, $75 and $100
JJRT Pools and Spas
Churchtown Fire Co.
Proceeds from the tournament will help fund Camp Sundown programs.
Camp Sundown is the only camp in the United States dedicated to children with Xeroderma Pigmentosum (XP), a condition that prohibits sufferers from exposure to sunlight and other UV rays.
To learn more about Camp Sundown visit https://www.xps.org/camp-sundown