New England family asks for communities help in finding a donor for daughter

Any parents worst nightmare is having a child who is sick, and there is nothing they can do about it.

Jessica and Kyle Johnson have a beautiful five-month old daughter named Henley, and unfortunately she doesn't feel well.

"She was diagnosed a with rare genetic disorder called Swachman -Diamond Syndrome, and that diagnosis was around 7-8 weeks old," said Jessica Johnson, Henley's mother.

Jessica said she knew early on that something was wrong

"She was failing to gain wait and her skin color would change pretty dramatically," said Jessica.

Henley needs a bone marrow transplant and a match is hard to find, so the Johnson's got in contact with a National Bone Marrow program called, Be the Match.

"They have been great about raising awareness and her need for a transplant, and her need for a match, said Jessica.

The Johnson's said people are already coming to their little girl's aid

"Around 200 have volunteered to get tested just because of Henley. They have been inspired by her," said Jessica.

Jessica and Kyle said one of the most frustrating things about the process is that they are not able to do the things outdoors with Henley, that a parent looks forward to doing with their child.

"Basically a lot of times, it is just sitting and talking to her, spending time with her in the evenings after the other two go to bed," said Kyle Johnson, Henley's father.

Henley's dad enjoys watching football with her, and her mom likes to read to her, and her sisters just like spending time with her.

Time that is precious to all of them.

On Sunday the Johnson's will be heading to Boston Children's Hospital for further treatment on Henley's condition.

To sign up for the national bone marrow registry, please visit:

https://join.bethematch.org/healinghenley 

 

 

 


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