In sharing our rare disease stories, our collective light shines brighter
Alone, we are rare, but together, we form a bright constellation
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I’ve lived in New Mexico for 20 years, but I only recently visited the Loretto Chapel in Santa Fe. The chapel is known for its spiral staircase, built in 1878 with wooden pegs only, no nails. The staircase rises 22 feet to the choir loft without any central support. Seeing it took my breath away.
The chapel has stained-glass windows and gold accents, and its ceiling, with graceful lines and gold trim, is stunning. The Gothic-style architecture gives the small chapel a sense of majesty. The pointed arches help create a peaceful, sacred feeling.
This ceiling reminds me of another, even grander one. But it’s not in a cathedral with Rembrandt’s art. Instead, it’s at the Give Kids the World (GKTW) Village in Kissimmee, Florida.
The village is an 89-acre nonprofit resort that provides critically ill children and their families with free, weeklong wish vacations to the Disney parks. I know this place well because my youngest son, Caeleb, was granted a trip there in 2011.
A magical week
When the social worker from the treatment center called to say Caeleb would receive a wish, I was confused. I thought wishes were only for children who were dying. But Make-A-Wish grants wishes to any child diagnosed with a critical illness. At that time, Caeleb was facing serious challenges with hemophilia and a high-titer inhibitor. He was also undergoing chemotherapy as part of his treatment.
The trip was amazing. At the GKTW Village, each family lives in a small house, creating a friendly neighborhood feel. The main street has an ice cream parlor open all day and night. Families are encouraged to have ice cream for breakfast, and we did every day. Everyone is treated like royalty. Thinking back on it still brings me to tears.
One of the best parts of the resort is the Castle of Miracles. Each wish child decorates a star, which is then placed in the Castle’s sky. There are nearly 200,000 stars in the domed ceiling, each one shining with a child’s name.
The sparkling stars represent the strength of each child and their family, giving voice to the pain and struggles they face. It’s a place where these amazing children come together and are treated with dignity, respect, and love. Here, they experience the joy of Disney in a way that helps them feel whole.
Not all the children at GKTW have the same illness, but they share something important: Each has a critical illness, and many have a rare disease. At the village, families share their stories and help others understand what their child is going through.
Coming together to form a constellation
Sharing stories — whether in the cafeteria line, at the ice cream shop, or walking down Main Street — was powerful. I believe in the importance of sharing our stories, and there’s a special chance for you to share yours, too.
Feb. 28 is Rare Disease Day, a global movement for people affected by rare diseases. Through advocacy at every level, rare disease advocates and organizations work to ensure everyone has equal access to care, regardless of diagnosis. The annual event fosters community and the sharing of stories.
Every story shared — whether in a small group, at work, or online — gives voice to a struggle. These stories name the rare disease and the individual who didn’t choose it, but lives with it anyway.
Each story reminds me of the twinkling stars in the Castle of Miracles. These patients are no longer lone, faint flickers in the dark; together, they form a bright constellation.
Rare disease families may often feel alone in exam rooms and hospital hallways, but together, their light grows stronger. Their stories create a sky too vast to ignore.
Like the ceiling in the Loretto Chapel, there is something miraculous about what holds everything up. There is no central support visible, and no single beam bears the weight. Instead, it is the combined strength of many — families, advocates, clinicians, researchers, and patients — sharing the load together.
On Rare Disease Day, when you share your story, you add another star to the sky. In that shared light, we remember that rare does not mean invisible. Rare does not mean insignificant.
Rare means luminous.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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