Fighting for Baby Waylon: A Miracle for His Mind
Our world changed the moment our sweet boy, Waylon, was diagnosed with Tay-Sachs disease at just 6 weeks old. It is a diagnosis no parent is ever prepared to hear—a rare, relentless genetic disorder that slowly takes away a child’s ability to move, see, and swallow.
Waylon is now 7 months old. Watching your child face these hurdles is a heartbreak beyond words, but he is a fighter, and as long as he is fighting, we are not giving up on him.
A Glimmer of Hope: The Gene Therapy Trial
We have finally been given a major, life-altering opportunity: Waylon has been accepted into a specialized medical trial conducted across UMass Chan Medical School and Massachusetts General Hospital. This treatment is a sophisticated gene therapy designed to fight the progression of Tay-Sachs and hopefully give Waylon a better quality of life.
The administration of this therapy is a complex, two-day process involving direct delivery to the brain and spinal cord. Following these procedures, Waylon will be admitted to the Pediatric Intensive Care Unit (PICU) for close, specialized monitoring.
The Challenge & Our Goal
While the clinical trial covers the medical procedure itself, the cost of relocating our family for the required 14-week monitoring period falls entirely on us.
Our goal is to raise $35,000. This is the amount needed to bridge the gap for lodging, travel, and living expenses in Massachusetts. If we do not reach this goal, we will not be able to make the trip to Boston for this trial. We are going to try our hardest to get there, but we want our supporters to know: If we do not reach the goal to attend the trial, every dollar donated will still go directly to Waylon. Because Tay-Sachs is a progressive disease, Waylon will face many hospital stays and specialized care needs in the future. Your generosity will ensure he has everything he needs for his comfort and care, regardless of the path ahead.
How Your Support Helps
Your donations make this journey possible and allow us to focus entirely on Waylon’s healing:
• 14 Weeks of Lodging & Living: Rent for a safe recovery environment near the hospital, utilities, and daily essentials.
• Food & Groceries: Covering the cost of meals for our family while we are away from home.
• Lost Wages: Offsetting the loss of income during our extended leave from work.
• Travel & Specialized Care: Covering the move to Massachusetts and any medical equipment Waylon needs to stay safe.
Join Waylon’s Village
Waylon is a ray of light in our lives, and we want to give him every second, every smile, and every chance possible.
• Pray & Keep Him Close: More than anything, we ask for your prayers. We ask that you simply lay baby Waylon on your hearts. Whether through prayer, positive thoughts, or silent reflection, we believe in the power of a community lifting him up together.
• Donate: Any amount—no matter how small—helps us reach our $35,000 goal.
• Share: If you cannot donate, please share our story. Spreading the word helps us reach a village we never could on our own.
Thank you for being part of Waylon’s journey. We will keep everyone updated as we head toward this monumental step in his fight.
With love and hope,
Waylon’s Family