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Clark is a 5 year old boy who lives in CT, USA with his parents and two younger sisters. His favorite things are Elmo, rhythmic music, and toys with lights.

Clark began having seizures when he was an infant.  After the seizures began, his life changed, and he started having many other health troubles.  Some examples are difficulty holding up his head, vomiting daily, and many hospitalizations for illnesses and seizures, including time in pediatric intensive care.  Unfortunately, his seizures are drug resistant.  He also has developed dystonia, which is a movement disorder causing involuntary, painful muscle contractions and spasms, which has also been resistant to medication.  Dystonia often progressively worsens over time.  Clark receives his nutrition and vitamins through a feeding tube.  There are many other health challenges for Clark related to this condition, and more likely to come as he grows.  

Many days of Clark’s life are a struggle.  His parents mostly must focus on ways to keep Clark safe.  Sometimes this means not going out to places with his sisters, missing out on outdoor activities and holiday gatherings, or spending his birthday in the hospital.  There are days where our efforts to help him seem futile, and the best we can do is hold his hand, pray, and try to figure out what to change tomorrow to help get him back to being stable.  Clark is non-verbal and has a visual impairment, so this can be a very difficult challenge.  He suffers from GABRB2 genetic epilepsy which has no treatment.  

Clark and the community of kids diagnosed with GABRB2 gene mutations need funding for research toward a cure for this condition.  

Please visit our donation page or help us connect to organizations/foundations who may be able to help.

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