More Precious Time With Graeson

Graeson Riley was born on March 11, 2013.  Within the first 24 hours she began having seizures.  We were told she would probably outgrow them and there would be no damage.  After 2 spinal taps, 3 MRI's, several EEG's, and numerous blood test our beautiful little sweetheart was diagnosed with a rare seizure disorder called Ohtahara Syndrome. This condition is not something she will outgrow and it has caused significant damage to her overall health thus far.  The prognosis for this condition is not promising, typically children with this condition do not live past the age of 3.  Seizure medications either don't work at all or will work for a short period of time.  Currently Graeson is on 3 seizure medications, the ketogenic diet, and multiple vitamins and supplements.  Our living room looks like a mini hospital room with an oxygen machine, pulse ox machine, feeding pump, suction machine, and  a cough assist machine.  Between the seizures and the seizure medications she sleeps a lot.  We have only seen her smile a few times and have heard her cry a few times.  Imagine not knowing when your baby is uncomfortable or in pain.  We are hoping to raise enough money to supplement our family income so I can work part time and stay home with Graeson more. With the demands of medical bills and every day living we can not live off of one income. This will give me a chance to spend more quality time with her and be able to be more available for all of her appointments.  This will also help me to be more available for Graeson's older sister and brother as it is very difficult to take care of  a child with special needs, work full time, keep up with every day chores, and keep up with 2 other very active children.  Graeson is such a beautiful little girl that fights each and every single day and with all of the many challenges that she faces it is our hope to be with her as much as possible. Thank you from the bottom of our hearts for taking the time to read about our beautiful Graeson and giving me the chance to spend more precious time with her.


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Claudine Rutmann 
New Carlisle, OH
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