Gorlin Kids' Page
The BCCNS Life Support Network wants kids with BCCNS to know that they aren't alone
in their struggle with this rare disorder. One part of our efforts to help kids (and others) with
BCCNS feel included and happy is the Sunshine Club. Click the
link to find out more—and maybe spread a little sunshine yourself!
The Band-Aid Buddy Club, founded by Network member Jennifer Werkmeister, provides affected
children with teddy bears that they can take with them to surgeries and other hospital stays.
Here's how it started, in Jennifer's words:
I was diagnosed with BCCNS at the age of fourteen, at which time
I had to have a few different surgeries. Before my very first surgery after being diagnosed, my
mom gave me a bear to take with me to surgery. When I came back to my room, my mom had band-aids
on my bear where I had my bandages. Every surgery after that, it was the same thing: my bear had
band-aids where I did.
In 1999, when I had my last jaw cyst surgery, my
mom wasn't there to put the band aids on. The OR nurse asked me about my bear, and I shared my story
with her. She then took the wooden cross off of her necklace and attached it to my bear with sutures.
After surgery, I woke up briefly to see this nurse in my room, putting my bear under my arm. When I
finally woke up and was able to focus, the bear had two band aids across its mouth, with well wishes from the OR nurse.
To this day, fourteen years later, If I go to see a
specialist for BCCNS or have a surgery, my bear, Miracle, is with me. He and I have been through some
difficult surgeries together, and he has brought me a lot of peace when I need it most.
Now the BCCNS Life Support Network would like to give
you the chance to have a friend to go with you through your journey with BCCNS. If you would like a
Band-Aid Buddy, we can send you a Build-a-Bear certificate to
go and build your own buddy. You can also use this certificate to order a “Buddy” online if you do not
have a store nearby. The certificate also comes with a “You are not alone” T-shirt for your “Buddy.”
We send Band Aid Buddies to children with BCCNS free of charge, but donations
are always welcome. Requests can be made through the office.
Camps for Kids
Here's a list of summer camps that children affected by BCCNS may qualify for.
Follow the links for more information.
- Camp Wonder - A summer camp
for children with serious or fatal skin disease. Run by the Children's Skin
- Camp Discovery - A week-long camp
for children with chronic skin conditions. Sponsored by the American Academy of
- Victory Junction - A camp
based in North Carolina for children with serious illnesses or chronic medical
- Hole in the Wall Gang Camp -
Founded by Paul Newman, this summer camp and year-round center helps children
with cancer, chronic illness, and other serious medical conditions.
- Camp Trillium - Operated by
the Trillium Childhood Cancer Support Centre in Canada, this summer camp
has two Ontario sites and operates day camps in ten other cities.
- Camp Simcha - A kosher overnight
camp operated by the Chai Lifeline, located in New York state.
College-age people affected by cancer may qualify for a scholarship from
Cancer for College, a 501(c)(3)
charity founded by a two-time cancer survivor. Priority is given to residents of
southern California, and giving in general is limited to residents of the United
States attending school in the US or Puerto Rico.
Some local branches of the American Cancer Society
also give out Youth Cancer Survivor scholarships. You can use their ZIP-Code finder for
more information on local events.