FACING ALS TOGETHER
Jonathan Carrion is a devoted 38-year-old father to Remy, Lily, and Sophia, a loving stepfather to Reese, and the kind of friend who would do anything for anyone. Recently, Jonathan and the love of his life, Valerie, celebrated their engagement, ready to begin a lifetime of building dreams together.
As a licensed electrician, Jonathan had recently taken a courageous leap to start his own business. He was in the process of joining the Local 103 Union to secure the health insurance and stability his family deserved. Tragically, a nightmare struck before those benefits could take effect.
REALITY OF THE FIGHT
What began as minor symptoms in the summer of 2025—loss of grip strength and muscle cramping—spiraled with terrifying speed. In November, Jonathan received the devastating diagnosis of ALS. The progression has been brutal; within months, he lost the ability to walk and use his hands. Today, Jonathan has lost nearly all bodily function. He communicates using an eye-tracking system, but while his body has failed him, his mind remains sharp—he is fully present, aware, and fighting every single day.
The toll—both financial and emotional—has been immense. After moving from New Hampshire to Massachusetts for specialized care and accessible housing, the family’s roles shifted overnight. Valerie left her medical career to become Jonathan’s full-time caregiver while still raising the children.
ASSISTING JONATHAN
The family is currently navigating several critical needs to ensure Jonathan’s safety and quality of life:
– Specialized Equipment: A motorized wheelchair specifically designed for ALS patients.
– Basic Comfort: A medical-grade adjustable bed.
– Transportation: Handicap-accessible transportation for medical appointments and essential travel.
– Daily Care: Essential home medical supplies, sanitization materials, and equipment required to maintain a safe and sterile environment.
Instead of planning a wedding, Valerie’s days are now defined by a singular focus: Jonathan’s comfort and dignity. We are asking for your support to ensure Jonathan receives the specialized care he deserves.
To make a tax-deductible donation, please click the following link: