The New Year
always brings a bounty of mixed emotions for me. Standing on the brink of the
new millennium, I find I am thankful for my son Kurt's good health and pray it
continues. Fear plays a big role as I think about what tomorrow will bring, but
I also feel hope at the thought of how far medical technology has brought us in
such a short time. And I am grateful. Grateful to those medical researchers who
decided Cystinosis was worth taking a second look at. Without their efforts
Kurt's future would not have such wonderful possibilities.
What will this year bring? Continued
health for my son Kurt? More dose changes? More medications? More doctor
appointments? More uncertainty? More questions? A cure? A cure what a thought.
But I do believe with all my heart a cure is possible.
My son Kurt is eight years old now and I
am ashamed to admit I'm only just now trying my hand at fundraising on behalf
on Cystinosis research. I am humbled at the many different fundraising efforts
I've read about in the Cystinosis Newsletter and on the web site, fundraising
events put on by special families and friends whose lives have been touched in
some way by Cystinosis.
After reading
about the "gift wrapping" idea for Christmas I decided this was just what was
need to get my feet wet. I called my neighborhood Barns & Noble to see if a
date was still available and to my terror the community relations manager
suggested December 24th, Christmas Eve as the perfect date for our fundraiser.
"You would have to work at least four days to make the money you could raise on
this one day", she told me very cheerfully. Christmas Eve? I gulped, shut my
eyes for a moment and prayed my family would understand when I asked them for
their help, prayed they would jump to the challenge.
My family's Christmas Eve is filled with
traditions. It is a day in which emotional memories of Christmas' past and
thoughts of the future are often broken up by eating frenzies, Christmas light
drives, story telling, thirteen children ranging in ages from eighteen to two
years old, and the ever present jobs we enjoy as Santa's Helpers. It has been
this way for years and the thought of asking my family to do something "a
little different" was enough to make my knees shake.
So, with a certain amount of trepidation,
I approached my family and after the initial "Christmas Eve? All day?"
reactions, my wonderful family and friends did exactly what I'd hoped- - they
jumped to the challenge.
With the help of my friends and family we
manned the "Courtesy Gift Wrapping" table from 9 am - 5pm. My sister added a
touch of hominess to our table by baking her delicious chocolate chip and
snickerdoodle cookies and my nephew entertained customers by playing his guitar
and singing holiday songs.
The Cystinosis
Foundation brochures with Kurt's photo on the front and the poster board I'd
decorated with specific information about Kurt and his experiences brought an
amazing amount of interest. I couldn't believe the detailed questions raised.
People cared and they showed their concern through the donations they made, the
hesitant smiles on their faces and the looks of sincere emotion in their eyes.
My first attempt at fundraising is what I
call a "baby-step". I'm ready to take on something bigger next time and ideas
are there, ready to be acted on.
Christmas Eve 2000 was a new experience
for my family, one they tell me they would love to repeat year after year. Ah -
perhaps we've added a new tradition? I think so.
Stephanie Gillenberg
gillenberg@aol.com