NICHOLAS – OUR THANKSGIVING INSPIRATION!!! by Joanne Meyers

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Happy Birthday Nicholas!

Editors Note:  This month we are posting the stories of the 2014 Winter Walk Featured Families.  These families are sharing their stories to bring about greater awareness of epilepsy.  Nick’s mom has written this blog.  To support the Meyers Family’s effort please visit the Meyers Winter Walk Team Page  We hope to see you at the annual Winter Walk for Epilepsy on January 18, 2014. It’s an indoor walk! The Walks are held simultaneously at the SouthPark Mall in Strongsville and the Great Lakes Mall in Mentor.

Nick was diagnosed with Tubular Sclerosis shortly after his birth at 32 weeks.  Tubular Sclerosis Complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs.  The aspects of TSC that most strongly impact quality of life are generally associated with the brain:  seizures, developmental delay, intellectual disability and autism.  Current estimates place TSC affected birth at 1 in every 6000.  Today, there is no cure for TSC.

Since the age of 3 months, Nick has experienced daily seizures of all types.  At times, he experiences seizures that result in him falling to the ground, resulting in injuries.  Many, many medications have been tried and have failed to control them.  He is currently taking 13 pills per day, a mixture of seizure medications, and has not maintained seizure control.  He has spent approximately 5 weeks in hospital monitoring units to determine if he is a candidate for brain surgery.  So far, all attempts have been unsuccessful.

Nick is non-verbal, developmentally delayed and exhibits many autistic qualities.  In spite of this he is a very energetic, happy, determined and loving young man.  Even though he is non-verbal, he makes his wants, needs and emotions very apparent to those around him!  He exhibits an amazing sense of humor that shines through even without the use of words.  He has chosen to embrace life and live each and every day to the fullest.  He doesn’t waste one second feeling sorry for himself.

As a family, we’ve chosen to not allow Tubular Sclerosis or epilepsy define Nick or our lives.  We make the conscious effort, led by Nick’s example, to go on living, even on the worst days.  This would not be possible without prayer, laughter and the amazing support system that has surrounded us.  We are blessed that every aspect of Nick’s life is supported with individuals that accepted him unconditionally and lovingly.

Our family and friends are always there to provide constant emotional support.  Nick’s classroom staff, in the Multiple Handicaps room at Greenbriar Middle School in Parma, are his biggest cheerleaders.  They challenge him each day to achieve success  through academics, life skills and social skills.  In the summer, he attends Camp Happiness (Catholic Charities) where he is accepted and loved unconditionally.  He participates in Parma Pride, Parma’s special needs athletic program.  He comes together with other special needs children, learns athletic skills and gets the opportunity to just be a kid.  He participates in activities at his little brother’s school where he has never been looked at as “different”.  He is a member of Troop 2008, Parma’s special needs Boy Scout troop, where he can have fun with his friends.  His medical team at Cincinnati Children’s Hospital works tirelessly to keep up with his ever changing medical needs, and provide all encompassing support for our family.

Even with the battle’s that have been presented to Nick, he is the happiest and most content when our family participates in events that involve “giving back”.  He participates in Catholic Charities Walk of Hope.  He helped to plan a movie for special needs individuals with his dad at PlayhouseSquare.  He helps to raise funds for Troop 2008 so that he and his friends can go on field trips together.  He is participating in this year’s Epilepsy Winter Walk to help raise awareness and support for those with epilepsy.

Nicholas was born on Thanksgiving Day, 2001.  That truly summarizes Nick.  As a family, we are so thankful to have him in our lives.  He is the best son and big brother imaginable.  He has taught us the true meaning of life:  to count your blessings, love unconditionally and to give back to others in need. Please join our family and our team on January 18, 2014 at Southpark Mall for this year’s Epilepsy Association Winter Walk.  Please follow Nick’s example and give back to those in need by donating to this cause that is so special to our family.

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