Ashley Chronister and her husband Rob Kobernat welcomed their beautiful baby girl, Isla, to the world on Nov. 8, 2022. She was born a few weeks early, at 37 weeks. Isla weighed just 4 pounds, 5 ounces. Even though she was small, she appeared to be a healthy little girl.
However, after routine newborn tests were completed, the Roscoe family discovered that she had a rare and potentially deadly complication. She was born without an immune system. Isla was diagnosed with Severe Combined Immunodeficiency Disorder (SCID).
When she was 10 days old, she was transferred to Lurie Children's Hospital in Chicago where she has remained in isolation.
Her parents learned that the only option to save her was a bone marrow transplant. All family members were tested, but none were a match.
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Time was getting short. The stem cell transplant needed to be completed before she was three and a half months old.
Ashley went on a mission to give her baby girl a chance of survival. She reached out to area communities for help. Finally, a compatible donor was found through BeTheMatch.org. Isla needed a week of chemotherapy before the transplant was done on Mar. 3. “It will be a few weeks before seeing any cell growth. She will also need transfusions for a couple of weeks.” Rob said.
Isla’s aunt Becca Kobernat stepped in to help the family with rising medical bills. She set up a Go Fund Me account in the family’s name. “I am surprised what everyone is willing to do,” Rob said.
“Family, friends and people we don’t even know are helping us. Our employers have been really understanding. It’s been truly overwhelming.”
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Isa has been in isolation at Lurie Children’s Hospital since Dec. 12, 2022. Her parents have been taking turns going back and forth to Chicago and looking after their older children, Braelynn and Jackson, at home. “It’s been pretty hectic around here” Rob said. “The kids understand that we are stressed. We are doing okay.”
Isla will remain in the hospital for a few weeks following the transplant. Then the family will move into Ronald McDonald House near the hospital until they can bring the baby home in about a month.
Ronald McDonald House supports families of sick children with housing while their children recover.
On Mar. 11, 2023, Ashley posted on Facebook, "We officially got word yesterday that Isla is engrafting. It’s working. I feel like a new person. I’m so happy. Just a few more weeks… and this chapter will be over. I can’t wait. We will all be together soon."
For information and to register to be a blood stem cell donor, contact BeTheMatch.org, or call 888-999-6743.
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