Idaho community raising money for 7-year-old after diagnosis of rare blood disorder

Addison Schwenson is seen in an undated photo. The Idaho girl has been diagnosed with a rare blood disorder that eventually leads to leukemia.

Addison Schwenson is seen in an undated photo. The Idaho girl has been diagnosed with a rare blood disorder that eventually leads to leukemia. (Family photo)


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LEWISVILLE, Idaho — A 7-year-old girl in Idaho is at the forefront of many minds in the Lewisville area, as her family and community plan a fundraiser after she was diagnosed with a rare blood disorder that eventually leads to leukemia.

Addison Schwenson likes unicorns, riding her bike, and "Lilo & Stitch."

"She's just your normal 7-year-old. She likes reading, word searches, doing brain activities and riding her bike," says Addison's mom, Rebekah Kinney. "She likes trying to be everything her big brother is and do everything he can do."

Unfortunately, Addison has little time for these things now, as she was diagnosed with multiple genetic mutations, that doctors say will likely cause her to have leukemia in the future.

According to Kinney, both of her children, Addison and her 10-year-old brother, Aidyn, have been diagnosed with autism and developmental delays.

In early 2024, she noticed Addison began having some unusual symptoms.

"She did have symptoms like being tired, paleness, bleeding and bruising easily," says Kinney. "But it was always just put off as anemia, lack of sleep, and her possibly having the same bleeding disorder as me and her brother, which causes a lot of the same symptoms."

In March, Kinney got a referral for both children to Primary Children's Medical Center in Salt Lake City to get to the bottom of their health abnormalities.

"I just wanted to see if there was anything genetic-wise causing these cognitive and developmental delays they have," says Kinney.

After general panels were done, Aidyn's results came back normal, but Addison's did not.

"They let me know that her's came back with an abnormal result," says Kinney. "They told me they needed to do some more looking into it and try to figure out what to do about that low result for monosomy 7."

Addison Schwenson is seen in an undated photo. The Idaho girl has been diagnosed with a rare blood disorder that eventually leads to leukemia.
Addison Schwenson is seen in an undated photo. The Idaho girl has been diagnosed with a rare blood disorder that eventually leads to leukemia. (Photo: Family photo)

According to the National Library of Medicine, monosomy 7 syndromes are the onset of bone marrow insufficiency and cause an increased risk for many things, including myelodysplastic syndrome. Now, Addison needs a bone marrow transplant.

"Monosomy 7 is kind of a precursor for blood or bone diseases in general," says Kinney. "So they were like, 'You know, we'll see what she's predisposed to to see if we need to do any monitoring and how often we need to do monitoring.'"

At the time, the doctors told Kinney they weren't expecting a bad result. In December, Kinney received a call that was the exact opposite of those expectations.

"They called me that Monday before New Year's and they said, 'So we got the results back from her testing, and the results were a lot worse than we were expecting them to be.'" says Kinney. "They said she had MDS. … The doctor told me that it wouldn't be a matter of if it mutated to acute myeloid leukemia, but a matter of when it did, which is why we are trying to do the transplant so fast."

Not only that, but the results came back that Addison also had a germline GATA2 deficiency, caused by a genetic mutation, giving Addison an even higher chance of developing myelodysplastic syndrome and acute myeloid leukemia.

"Going forward, we'll have to keep monitoring for things regarding that, because that one won't go away with the bone marrow transplant," says Kinney. "That will kind of be a lifelong thing that she's always going to have."

Addison's family were quickly tested to see if they were matches to donate bone marrow to Addison, but they all came back at only a five out of 10 match.

"We don't have a family donor that's a great match. All of us are five out of 10," says Kinney. "Because of there not being a 10 out of 10 family match, they'll have to do more chemo conditioning just to make sure that hopefully the bone marrow takes and is good and doesn't have a problem going forward."

Addison has been submitted to the universal donor portal in hopes of finding a high match.

Kinney says this time has been extremely difficult on her family, as they don't have relatives in the area and will have to spend lots of time in Salt Lake City, away from work.

"We realize that we are going be in a hardship. Me and my husband earn pretty similar incomes, so we're going to lose about half our income when we go down to (Salt Lake City)," says Kinney. "They'll have to do at least one more bone biopsy on her … and then we'll be down there for like 12 days for the chemotherapy and conditioning."

After that, the family will have four more weeks in the hospital, then be required to live within one hour of Primary Children's Medical Center for at least 100 days.

"It'll be a substantial amount of time I'll be away from work. We're looking at a minimum of five months," says Kinney.

Kinney says their family is hopeful, and trying to keep good spirits.

"I think all of us have a lot more anxiety going on," says Kinney. "We've kept things really in plain terms for her, that she just has some bad cells in her blood, and we're going to get rid of them and they're going to give her new cells."

In an effort to help ease the family's financial burden, community members are organizing a Valentine's Day Fundraiser to raise funds for the family's travels and medical expenses.

The fundraiser will be held on Feb. 13 from 7:45 p.m. to 9 p.m. at In Step Fitness, 3941 East 240 North in Rigby, Idaho.

A GoFundMe* has been set up for helping for Addison.

*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisers and otherwise proceed at your own risk.

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