Story
My name is Heidi Ciravola. Matthew and Amanda are close friends (like family) to myself and my family. In fact, it was my husband and I who introduced them! They are facing the unimaginable as they navigate the medical needs and expenses associated with their son Aiden’s devastating diagnosis.
We are heartbroken to share that their little man Aiden was diagnosed with a rare, fatal genetic condition, called Sandhoff Disease. It is a progressive neurodegenerative condition that will slowly take away his ability to do things like sit up, smile, move, see and swallow. It is a relentless, devastating disease that affects the brain and spinal cord on a cellular level. Sandhoff disease is clinically indistinguishable from the more commonly known Tay-Sachs.
Currently, there is no cure and this disease is always fatal. The life expectancy is typically around age two.
Unfortunately, the past few weeks have come with a rapid decline for Aiden. They have spent the majority of the last month in the hospital trying to navigate the best way to keep him comfortable. He has acquired a feeding tube and is battling frequent seizures. Aiden has begun to be completely immobile, requiring a wheelchair, adaptive equipment, and around the clock care.
Here are just a few of the things that are required for them to care for Aiden:
Just the cost of feeding him is $1500 a month
Cough Assist (Biwaze Cough System)
Medical Grade Pulse Oximeter
Vest AirWay Clearance System
Medical Grade Suction Unit
Oxygen
Oxygen Concentrator
Hospital Bed
Nebulizer
Feeding Pump (Enteral Infinity)
The incidence rate for his case is, literally, one in one million. Their goal is to spend as much quality time as they can with him and to help him pass as comfortably and naturally as possible.
How do you fit an entire lifetime of experiences into such a short time? Any donation will help ease the burden of rapidly accumulating medical bills, as well as future funeral expenses, giving them the opportunity to focus on and enjoy every moment they can with Aiden.
From Matthew and Amanda:
“Aiden is resilient and shows us every day that he is still here with us. He is our little sunshine and continues to light up every room that he is in. As long as he is still fighting along we will be right by his side doing the same thing. We are hopeful to experience as much as we can with Aiden in the coming months. We appreciate all of the love and support we have gotten as we navigate this impossible journey.”
Organizers :
Heidi Ciravola is organizing this fundraiser on behalf of Amanda Witt.