Henry’s Story

My name is Michael, and I’m raising funds for my 11-year-old nephew, Henry.

Henry was recently diagnosed with Retinitis Pigmentosa (RP), a rare genetic disorder that causes the gradual loss of vision. In RP, the cells in the retina—the part of the eye that captures light and allows us to see—slowly break down over time. For Henry, this progression has been unusually fast, and he is already losing much of the limited vision he has left.

Over the last few years, we’ve watched Henry slowly lose the ability to do things many kids take for granted. Because RP first affects night vision and peripheral vision, activities that happen in low light have become especially difficult.

Henry has had to stop trick-or-treating because he cannot safely see where he’s walking in the dark. Night games, evening events, and other activities with changing lighting have become challenging or impossible. Even watching fireworks—something that should be magical for a kid—has required him to rely on others for help.

Henry’s peripheral vision has already become extremely restricted, creating the sensation of looking through a narrow tunnel. Things most of us never think twice about—spotting something out of the corner of our eye, navigating crowded spaces, or adjusting from bright sunlight into darker places—have become daily challenges.

At just 11 years old, Henry has already begun preparing for the world where his vision will be very limited. He has started mobility training and is learning how to navigate safely using a white cane, and he has also begun learning Braille so that he can continue reading, learning, and maintaining independence as his vision changes.

Watching a child begin preparing for blindness is something no family ever expects. But Henry has faced it with incredible courage, curiosity, and determination.

Like many kids his age, Henry also loves spending time playing video games and enjoying the worlds of his favorite stories. One of the things he shares most with his dad, Tod, is a love of Star Wars. Exploring that universe together has become something special they bond over. Those moments — sitting together enjoying a story they both love — are memories our family treasures, and they’re part of why helping Henry continue to experience the things he loves is so important.

At the same time, he has been forced to think about something most kids never have to consider:

What would you want to see if you knew you might not be able to see it someday?

Henry has started creating what we call his “Visual Bucket List” — a list of places he dreams of seeing and experiences he hopes to have while he can still experience them to the greatest extent possible.

Henry’s family is also navigating some big changes. In part due to his diagnosis and the support he will need moving forward, Henry and his family will be moving back to Connecticut this coming year to be closer to family and their support system. Henry will be returning with his mom Katie, dad Tod, and his sister Meredith, so they can be surrounded by the people who love and support them as they navigate the challenges ahead.

While the future will include many adjustments, our family wants to make sure that Henry also has the chance to experience the joy, wonder, and beauty of the world while he still can see it.

Our goal is simple: help Henry see as much of the world as possible while he still can.

Henry’s Visual Bucket List

Henry loves nature, animals, sports, and adventure. Some of the experiences he hopes to have include:

Henry also hopes to:

Like many kids his age, Henry also loves video games and the Star Wars universe, something he especially enjoys sharing with his dad, Tod.

If possible, Henry would also love opportunities like:

Those moments — sharing something he loves with his dad and family — would mean just as much as any trip.

These are the kinds of experiences where sight plays a huge role — the colors, the scale, the movement, and the memories created from seeing them with your own eyes.

Our hope is to help Henry experience as many of these moments as possible while he still can.

How Funds Will Be Used

Funds raised will help make Henry’s visual bucket list possible by helping cover:

Every experience will help Henry see more of the world while he still can.

How Your Donation Helps Henry

Every contribution helps create a memory Henry will carry with him for the rest of his life.

Examples of what donations may help support:

$25 – Helps cover transportation for a local experience

$50 – Helps with admission to parks, museums, or wildlife experiences

$100 – Helps support travel to see natural wonders like the Grand Canyon or Northern Lights

$250+ – Helps make major bucket-list trips possible

No donation is too small. Every bit helps.

Donations Aren’t the Only Way to Help

If financial contributions aren’t possible, there are other meaningful ways to support Henry.

If you or someone you know can help donate experiences, travel opportunities, tickets, wildlife encounters, fishing trips, or sports experiences, we would be incredibly grateful.

Henry is a huge fan of New England and Boston sports, and opportunities like attending a game or special sports experiences would mean the world to him.

Even simply sharing this fundraiser can make a huge difference.

How You Can Help

There are three powerful ways to support Henry:

1️⃣ Donate if you are able

2️⃣ Share Henry’s story with your friends and family

3️⃣ Help connect Henry with experiences on his bucket list

Even if you cannot donate, sharing this fundraiser may help it reach someone who can.

Thank You

No child should have to rush to see the world before their vision fades.

But with your help, we hope to give Henry the opportunity to experience the beauty, wonder, and adventure that every child deserves.

Thank you for helping Henry see the world while he still can.