My name is D'Laci Duckett, and my husband Frank and I share a beautiful blend family of 7. In 2024, we welcomed our youngest and final child, Maximum. That same year we learned that Max would be born with myelomenningocele, the most common, and most severe form of spina bifida. At 25 weeks, he and I had open fetal surgery to repair his spine, and he was born days before Christmas. when Max was 13 months old, we learned though a routine anemia test at his 1 year well check that he was severely anemic, and found ourselves in h PICU, embarking on a journey through the world of hematology and oncology. Through countless tests, over the past 2 years, we have learned that he has a pathogenic variation located in the RPS19 intron, and he's been formally diagnosed with Diamond Blackfan Anemia. In Max's cade, the DBA caused the spina bifida, which makes his treatment particularly unique. in March of 2024, we began the process of bone marrow transplant, with our beautiful daughter Ruby offering the stem cells that saved Max's life. At the time I am updating this bio, Maximum is at day +30, poet transplant. At day +15, Max was moved to the PICU to troubleshoot needs for a cpap, as we were unsure if his breathing struggles at the time were from mucositis or his chiari malformation, which is a common comorbidity of spina bifida. On day +16, he was sedated for a routine MRI to determine the answer to that question, and quickly stopped breathing. The anesthesiologist saved his life by quickly incubating him, which allowed them to perform the scan, which showed no cha ges in his chiari, but caused a bleed due to low platelets from transplant, as well as bringing up the mucositis that was in the end, the trigger for the breathing difficulty. To stop the bleeding, Max could not take a vital medicine called defibrotide, which was treating venooclussive disease, a common and potentially fatal complication of bone marrow transplant. 1 day of missing that medicine caused his liver to engorge and rendered him extremely ill, setting back his recovery for an indefinite amount of time. While the transplant was a massive success, we are now focusing on treating and healing his VOD, so he will be able to get back on track to discharge to the local Ronald Macdonald house here in Charleston SC, until at least day +100. Our family lives 180 miles away, in Laurens, which is in the Upstate. We have maintained this fund, and use the donations to support fuel, food, and basic needs for Max and myself during this intense season away from home. Right now my husband is tending to our older kids alone, while I remain bedside with Max. any and all blessings are greatly appreciated, but if you can't donate financially, I urge you to consider donating blood. Sincerely D'Laci Duckett. April 26th, 2024
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