Kyndall Sewing
Gene: Unknown

In June of 2019, at 5 years old, we took Kyndall to her pediatrician because she was covered from head to toe in bruises and petechia. Her bloodwork showed critically low platelets and white blood cells so we were immediately sent to Omaha Children’s Hospital. She had a bone marrow biopsy the following day to rule out leukemia. Thankfully, that was negative. After doing several platelet transfusions, she was sent home with a diagnosis of ITP (Immune Thrombocytopenia). After MANY finger and arm pokes, hospitalizations and trials of medications that are typically used to treat low platelets failed, we were referred to a Pediatric Hematology/Oncologist that specializes in Bone Marrow Transplants at University of Nebraska Medical Center (UNMC) about 6 months later. At this point, her WBC and platelets continued to be low. Dr. Patel continued to run additional testing and did another bone marrow biopsy. After consulting with numerous oncologists around the country, Dr. Patel decided to continue to do bone marrow biopsies every 3 months to monitor the level of cellularity. At this point, we knew that she was in bone marrow failure and would likely need a BMT in the near future. He then had her telomere length tested and that was when we knew that her bone marrow failure was due to critically low telomere length.

In February of 2020, a repeat bone marrow biopsy showed the Kyndall’s cellularity had continued to drop and her red blood cells were also now low. It was decided that we should start preparing for her bone marrow transplant. Thankfully, her 12 year old sister, Kaitlynn was a perfect match and she was approved to donate her stem cells to her little sister.

Even though Kyndall’s specific gene hasn’t been identified, Dr. Patel treated Kyndall’s pre-transplant conditioning plan, as if she did have Dyskeratosis Congenita. She had 8 days of low dose chemo and 1 low dose of total body radiation. She had her transplant on September 11, 2020 and has been doing amazing since. She didn’t have any complications post transplant and other than now being allergic to Penicillin, she is living her best 7 year old life! She will continue to be monitored for other organs that may be affected in the future, but we are praying for additional research to continue to evolve which can help her and many others to live long and healthy lives.

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