Bret and Brooke had built a wonderful life. But when their baby girl, Harken, got sick, they had to sacrifice everything to keep their family together. "You have visions of who they're going to be when they grow up. In one day, that was all over."
When one-year-old Harken failed a hearing test twice, her doctor sent her to Boston Children's. "The diagnosis was devastating," said Brooke. "Harken had Hurler's syndrome, also known as MPS1, a rare degenerative disease that attacks her whole body."
treatment and hope
The first step: a Bone Marrow Transplant. "It was hard to see her lose her hair and lose her being a kid. But our caregivers assured us that all we love about her would come back. Boston Children's was the best place to be. Everyone involved supported us with kindness and reassurance throughout the whole process of living at the hospital. Even massage sessions were provided to parents to lessen the stress."
"Then we brought Harken home. I was saddened to leave Boston Children's—they felt like family. We had to keep Harken quarantined for a year. I quit my job as a teacher to be with her all the time. No visitors were allowed into our home scrubbing the floors and toys were an everyday thing. We couldn't even have a Christmas tree. It was hard on Leyland: he had a sister he couldn't hug too tight or touch without washing his hands."
keeping family together
"Because I no longer worked, we struggled. But Boston Children's found us financial support. They helped with meals and parking. They even found Leyland a support group for siblings of terminally ill kids.
After a while, we started to feel like a normal family again. I remember the first year we were allowed to have a real Christmas tree in our home again! Harken turned to me Christmas morning and said "I love you, Mom." The first time she said 'mom'. That meant the world to me."
"Harken attends preschool, which is amazing. You'd never know she has a terminal illness. She loves to come to Boston Children's for her treatments. They make it fun with stickers and art projects.
When they say 'Until every child is well,' that's how every person in Boston Children's feels. It's a beautiful place to deal with a not so beautiful ordeal. I would never go anywhere else."