For MPS Awareness Day, May 15
By Debra Bell, mother of Eddie James Bell Jr. (July 29, 1981 – April 4, 2022)
It’s hard to know where to begin when trying to describe someone as special as my son, Eddie. He was born with Hurler-Scheie Syndrome (MPS I) — a rare genetic disorder that placed many challenges in front of him, and us, from the very beginning. But to speak only of the illness would be to tell just one part of his story. Eddie was so much more than a diagnosis.
He was light. He was laughter. He was a fighter in every sense of the word.
Raising a child with a complex condition like Hurler-Scheie is a road no parent is truly prepared for. It tests your strength, your faith, your patience, and your heart. There were days I cried behind closed doors, nights I begged God for answers or strength. But then I’d look at Eddie — how he smiled through pain, how he found joy in simple things — and I’d remember what love in its purest form looked like.
He loved the color blue. A beautiful, soft blue that seemed to reflect his spirit: calm, brave, and full of light. And he had a lion with the name “Bellafontaee” on it, which became his symbol. Fitting, really. Eddie was courage. Courage in the face of endless medical appointments. Courage through surgeries, therapies, and the physical toll his condition placed on his body. Courage that inspired me every single day.
Even now, three years after he passed, I still find myself catching my breath when I think of him. There’s an ache that doesn’t go away. But alongside that ache, there’s something else: a fierce, burning pride.
Eddie lived for 40 years. Forty hard, beautiful, miraculous years. He touched people everywhere he went with his kindness, his humor, and his incredible resilience.
He made me a better person.
So I share his story not just to honor his memory, but to shine a light on the experience of parents like me. Parenting a medically fragile child is isolating sometimes. It’s exhausting. It’s full of moments people don’t often talk about. But it’s also filled with a kind of love that defies logic. The kind that teaches you what really matters.
To anyone walking this path: you’re not alone. And to every medical professional, advocate, and caregiver who crossed Eddie’s path: thank you for treating him like more than a patient. Thank you for seeing his soul.
Eddie James Bell Jr., you are forever my lion, my sunshine, my joy. You lived with courage. And I will carry that courage with me for the rest of my life.
If you or a loved one is living with Hurler-Scheie syndrome or any type of mucopolysaccharidosis (MPS), explore the information and resources in our NORD Rare Disease Report, including NORD RareCare® financial assistance for eligible individuals to access specialized care.
NORD proudly partners with the National MPS Society, a NORD Member Organization offering support and community to families affected by MPS. Contact them at [email protected].
We thank Debra for sharing her and Eddie’s story. Change starts by raising awareness. To share your own story with NORD, email us at [email protected].