In Loving Memory
We carry our angels with us always. This space honors every child and family member we have lost to Fenwick Syndrome. Their names remind us why this work matters — and their lives inspire everything we do.
If you are visiting this page in grief, we are glad you are here, and we are sorry for your loss.
🕯️ Light a candle to honor a child by clicking their memorial. Each candle glows as long as you are here.
Elijah James T.
2017–2021
“Eli loved dinosaurs, superheroes, and making everyone around him laugh. He fought with a courage that humbled every person who knew him. His parents established a research scholarship in his name.”
Sofia Marie L.
2019–2023
“Sofia was four years old and had already decided she would be a doctor. She spent her last year at home surrounded by her family, her cat, and an enormous collection of picture books.”
Marcus David R.
2015–2020
“Marcus loved music — specifically, loud music. His family says the house has been too quiet since he left. He is remembered at every Luminary conference with a moment of silence.”
Amara Joy O.
2020–2024
“Born during the pandemic, Amara never got to meet most of her extended family in person. She finally did at age two, and everyone who was there says it was one of the best days of their lives.”
Luca Benjamin P.
2016–2022
“Luca's parents say he taught their whole family how to slow down and notice the small things. His favorite spot was the front porch at dusk. They still sit there every evening.”
Grace Ellen H.
2018–2023
“Grace wanted to be a teacher. She spent hours teaching her younger sister everything she knew. Her sister, now seven, still announces things the way Grace taught her to — loudly and with enthusiasm.”
Noah Christopher A.
2014–2019
“Noah's family donated his art supplies to a children's hospital when he passed. They still receive letters from kids who used them. 'He's still making things,' his mom says.”
Isabelle Rose K.
2021–2024
“Izzy loved the ocean, even though she only saw it twice. Her family has started a tradition of going every summer in her honor — and leaving a flower at the water's edge.”
Owen Matthew S.
2013–2018
“Owen was the kid who remembered every birthday, every name, every detail about every person he met. His friends still text his old number sometimes, just to tell him things.”
Chloe Anne D.
2019–2022
“Chloe was three when she was diagnosed and three when she passed — nine months later. Her parents have spent every year since making sure no other family feels as unprepared as they did.”
James Patrick W.
2010–2017
“James is remembered at the Luminary conference every year. His parents helped found our bereavement support program and have supported dozens of families through their grief.”
Lily Catherine B.
2017–2023
“Lily was an extraordinary big sister to her two siblings. She taught them about Fenwick Syndrome before she could read, in the way only a six-year-old can explain a complicated thing — with complete confidence and total love.”
Supporting Bereaved Families
Losing a child is a different kind of grief — and losing a child to a rare disease carries additional layers of isolation, because so few people around you understand what you've been through. These resources are specifically for families navigating this kind of loss.
If you need to speak with someone who understands the specific grief of losing a child to Fenwick Syndrome, our community includes bereaved parents who have offered their time.
Connect with a Bereaved Parent Mentor“They are not gone as long as we speak their names, hold their stories, and let their love move us forward.”
— The Luminary Foundation Community