Prayers answered, a match is found; Henley Johnson to receive bone marrow transplant
NEW ENGLAND -- Nine-month-old Henley Johnson doesn’t know it yet, but her health is about to greatly improve, thanks to a stranger living thousands of miles away.
A bone marrow donor has been found for Henley, daughter of Jessica and Kyle Johnson of rural New England.
“Basically, the bone marrow transplant will give her a new blood system -- new hemoglobin, new platelets, and white blood cells (neutrophils) that fight infection,” Jessica said.
Henley was diagnosed with Shwachman-Diamond Syndrome (SDS), a rare congenital disorder characterized by bone marrow dysfunction, pancreatic and liver insufficiencies and skeletal abnormalities.
“The transplant still does not cure her other things, but once it’s successful, she won’t live in a bubble anymore -- where infection is such a scary thing. We won’t need to give her shots every other day, she won’t need blood transfusions any more, her body will heal better.”
She further explained that the twice-weekly injections provide a G-CFS factor to stimulate her bone marrow to produce neutrophils.
The Johnsons received notification Feb. 13 from the International Bone Marrow Registry that the donor has committed to going forward with the transplant.
“We know very little -- we were told he is a 23-year-old male and lives internationally,” she said. “In two years post-transplant, we can actually know his name and have contact information if he agrees. He knows he’s being a donor for a 9-month-old little girl in the United States.”
There will be no cost to the donor and the bone marrow will be harvested in his country. It will be hand-delivered to the University of Minnesota where Henley will be waiting. The transplant date has been set for May 10.
Henley must go through an evaluation to make sure her body is healthy, and then chemotherapy.
“After that takes place in two weeks, she’ll receive her new cells, similar to a blood transfusion. And then the waiting begins, we’ll wait to see if the cells grow and if her body accepts them. It’s like any other organ transplant.”
Jessica is realistic about the procedure -- it’s going to be difficult.
“Henley gets shots every other day and blood draws all the time,” she said. “It think it’s scarier for me, but she’s so strong, so resilient, that’s how she will handle this. She’ll need every bit of her fighting spirit.”
The Johnsons, including their twins Everly and Coven, plan to stay at the Ronald McDonald House while Henley is in the hospital. The process could take up to six months.
They are confident the transplant will change her life.
“Hopefully a year from now, we won’t worry about going on play dates, we won’t worry about being around other people. We’re constantly worried she’s going to get sick. It makes you a kind of OCD germ-person while I’m trying to protect her.”
Once home, nutrition will remain a concern. Shortly after Christmas, a tube was inserted directly into her stomach to help with feeding. She will still need enzyme supplements for digestion and growth stimulants.
Not all the expenses are covered by insurance. Family and friends have set up a benefit account at the American Bank Center. Additionally, T-shirts may be ordered from the Logo Magic online store. The shirts will be printed in multiple colors and sizes. They will feature a round circle with Healing Henley and handprints on it. The link is https://logomagicinc.com/healinghenley/shop/home
A thank-you to the donor isn’t enough, Jessica said.
“It’s such a selfless act, and for somebody so young who is willing to make that sacrifice. It’s heartwarming. He’s going to be like a family member. I really hope to meet him someday and that he could give Henley a hug.”