Three years
ago, I started babysitting for two children that live in Austin—a little boy
named Garland (now 8 yrs.) and Christiane (now 10 yrs). Christiane was
diagnosed with Batten disease a year before I started babysitting her. I had
never heard of Batten disease until I met Christine, a beautiful girl with big
blue eyes.
Batten
disease is a fatal, inherited disorder of the nervous system that begins in
childhood. Affected children suffer mental impairment, worsening seizures, and
progressive loss of sight and motor skills. Eventually, children with Batten
disease become blind, bedridden, and physically and mentally incapacitated,
requiring 24-hour care. Batten disease is always fatal, often by the late teens
or twenties.
Christiane
has been an inspiration to me. Every time I babysit her she reminds me that
life is short. We should take advantage of every opportunity and enjoy every
moment of each day we are given. Although Christiane is legally blind she lives
like she isn’t sick at all. She runs, plays, tells silly knock-knock jokes and
loves butterflies. She’s a normal kid, trying to live a normal life. It pains
me to know that she is losing her vision and that Batten disease could take her
life. I hope and pray for a cure to come fast. She is the reason why I am participating
in Run
to the Sun on April 20-21.
The best
part about my decision to participate in this fundraiser is the love and
support I have from my Zeta sisters. They inspire me just as much as Christiane
inspires me. When I told them about the event, they expressed zero hesitations
and wanted to join my team. I could not do this without the support of Anna Fleury, Bekah Thayer, Chelsea
Carbonel, Emma Weiss, Kate Onofrey, Kim Boller, and Maddy McGlamery. Nor
could I do it without the support of the chapter. Thank you to everyone that
has made a donation to our team. You are playing a role in making a difference
for children with Batten disease.
Please
continue to keep our team in your thoughts and prayers as we train for our
90-mile overnight relay and seek supporters that will make donations to our
team.
ZL,
Megan Gallishaw
PC '09
If you want to know more about Batten disease check out the
Beyond Batten Foundation website www.beyondbatten.org
If you would like to make a donation online click on the
following link: http://runtothesunrelay.com/donate/?kwoAdvocateId=87HJRQ7
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