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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