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Sophie's Story

Posted Oct 04 2009 11:12pm


I'm sure all of you living in this Infantile Spasms world know about Sophie and her upcoming surgery in a few months...But, for those of you close to my family who routinely check in on Austin, I'd like to share a story of a precious little girl named, Sophie, who could truly benefit from everyone's prayers.




Sophie is ahead of Austin in this IS battle by two years. She, too, was born in October (2005 instead of 2007) and diagnosed in May the following year. It has been a nonstop fight for seizure freedom for nearly 3 years now. Three years. Despite the odds, this adorable 3 1/2 year old has continued to progress and learn. She walks, talks, plays, and interacts. However, the endless list of anti-seizure meds have given her little relief from the seizures she suffers everyday, and her impressive development is now in jeopardy because of this. She has been to see Dr. Chugani several times, and is now, finally, a candidate for surgical resection.


Ever since her mother reached out to me after our return from Detroit, I've followed her story closely. At that time, she was not being considered for surgery and you could sense the urgency and pain in her mom's words. Now, she has a new option. And it's full of seizure freedom and developmental opportunity. But with that comes risks and uncertainty. She's not an ideal candidate which makes this already fearful experience all the more terrifying. I can't even fathom the true reality of this situation...and I've even recently sought out this option for Austin myself.


I'm drawn to this little girl's story for reasons not entirely clear to me. Maybe it's the charm and lovable character she portrays in her videos. Maybe it's because her determination and continued development reminds me so much of my Austin. Maybe it's because her mother's courage and persistence to free her baby girl from the statistics inspires me. And, possibly it's all the similarities we discovered after our visit to Dr. Chugani... and that despite not being a candidate in the beginning, that doesn't mean there's not hope for the future (as terrifying as it may seem). In any case, I will continue to follow her journey to seizure freedom and pray that this surgery gives her the future she deserves.


Please include little Sophie in your thoughts and prayers as she and her family prepare themselves for this courageous step to recovery from this devastating disorder, Infantile Spasms.















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