Community raises funds for 7-year-old after diagnosis of rare blood disease

LEWISVILLE — A 7-year-old 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 ultimately leads to to leukemia.

Addison Schwenson loves unicorns, riding bikes, and Lilo and Stitch.

“She’s just a normal 7-year-old girl. She enjoys reading, word searching, brain activities and riding her bike,” says Rebekah Kinney, Addison’s mother. “She likes to try to be everything her big brother is and do everything he can.”

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

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

In early 2024, she noticed Addison starting to exhibit unusual symptoms.

“She had symptoms like fatigue, paleness, bleeding and bruising,” Kinney says. “But it was always just written off as anemia, lack of sleep and the fact that she may have had the same bleeding disorder as me and her brother, which causes many of the same symptoms.”

In March, Kinney was referred both children to Primary Children’s Hospital in Salt Lake City to get to the bottom of their health abnormalities.

“I just wanted to see if there was something genetic causing these cognitive and developmental delays,” Kinney says.

Once the general panels were done, Aidyn’s results came back normal, but Addison’s did not.

“They let me know she came back with an abnormal result,” Kinney says. “They told me they need to do more research and try to figure out what to do about this low result for monosomy 7.”

According to the National Library of Medicine, monosomy 7 syndromes are the beginning of bone marrow failure and lead to an increased risk of many factors, including myelodysplastic syndrome (MDS). Now Addison needs a bone marrow transplant.

“Monosomy 7 is sort of a precursor to 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 surveillance and how often we need to do surveillance.'”

At the time, doctors told Kinney they didn’t expect a bad outcome. 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 his test results back, and the results were way worse than we expected,'” Kinney says. “They said she had MDS. …The doctor told me it’s not a question of if the disease turns into acute myeloid leukemia (AML), but rather a question of when it will happen, which is why we are trying to do the transplant so quickly .

Not only that, but the results came back that Addison also had germline GATA 2 deficiency, caused by a genetic mutation, giving Addison an even higher risk of developing MDS and AML.

“Going forward, we’ll have to continue to monitor things on this, because it’s not going to go away with bone marrow transplantation,” Kinney says. “It’ll kind of be a thing that lasts her whole life and that she’ll always have.”

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

“We don’t have a family donor who is a perfect match. We’re all five out of ten,” Kinney says. “Since there’s not 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 at the future.”

Addison was submitted to the Universal Donor Portal in hopes of finding a high match.

Kinney says this time has been extremely difficult for his family, as they have no relatives in the area and will have to spend a lot of time in Salt Lake City, away from work.

“We realize we are going to be in a difficult situation. My husband and I make pretty similar incomes, so we’re going to lose about half of our income when we go to (Salt Lake City),” Kinney says. “They’ll have to do at least one more bone biopsy on him…and then we’ll be there for about 12 days for chemotherapy and conditioning.”

After that, the family will stay an additional four weeks in the hospital, then will have to live within an hour of the primary children’s hospital for at least 100 days.

“I will be away from work for a considerable period of time. We’re looking at a minimum of five months,” says Kinney.

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

“I think we’re all a lot more anxious,” Kinney says. “We’ve kept it very clear to her that she just has a few 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 ease the family’s financial burden, community members are hosting a Valentine’s Day fundraiser to raise money for the family’s travel and medical expenses.

The fundraiser will take place on February 13 from 7:45 to 9 p.m. at In Step Fitness, 3941 East 240 North in Rigby.

If you would like to donate to the GoFundMe for Addison, click here.