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Noah's Ark

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When Noah was seven months old, he had his first seizure. They were temporarily controlled with medications, but unfortunately, that did not not last for long. Upon further investigation, it was discovered that he had an SCN2A mutation. This specific type of gene mutation is known to cause epilepsy. In Noah’s case- it was severe.


Noah has refractory epilepsy, which means that his seizures are not controlled by medications. He has been hospitalized since November of 2016 while his medical team has worked tirelessly to manage his symptoms. Noah's disease has made it hard for him to breathe on his own. He has become dependent upon a BIPAP machine- which helps to open up his lungs and breathe easier. He is also unable to eat, so he requires the use of a feeding tube in order to get proper nutrition.


Over the past year Noah’s condition has been steadily declining. Despite the absolute best efforts by an enormous team of amazing medical providers, we have run out of options. Noah has been experiencing an increase in both frequency, and intensity of seizures. His respiratory system is failing, and BIPAP is no longer enough to keep him comfortable. Doctors have notified us that the end is near, and we are trying our best to keep him as comfortable as possible.


During this past year, Pamela (Noah’s INCREDIBLE Mom) has not left his side once. She has been living in the hospital, right along side of him. She has been unable to work for the past year, as taking care of her son (and her daughter, Zoey) has always been her number one priority. Pamela is being faced with the devastating task of having to plan a funeral for her son, and unfortunately finances are stopping her from giving him the proper services that he deserves. Please help us to support this family during this difficult time, and please keep Noah in your thoughts and prayers.


All funds raised will go directly to Ronald Gomez (Pamela's brother-in-law), who will be handeling all funeral arrangements.
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Donations 

  • Yokasta Santana
    • $20 
    • 6 yrs
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Organizer and beneficiary

Amanda Louisa
Organizer
New York, NY
Ronald Gomez
Beneficiary

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