Proudly Supporting all Military Families with a Special Needs Dependent
Introducing Shelby Nazzario, Coast Guard spouse, stationed at Air station Houston. Shelby and her husband have been married for 9.5 years. Shelby loves the adventure of where the Coast Guard takes them the most about being a military wife.
Shelby’s son Kaden began his journey at 26-weeks’ gestation. Upon a fetal MRI, they were told that Kayden had a brain hemorrhage and it damaged his brain and thus filled with fluid. Kayden has hydrocephalus as a result of the hemorrhage and was monitored very closely until birth. At birth he was taken for a short stay to the NICU, but was deemed stable. Unfortunately, on day three of his life, the pediatrician discovered his bilirubin was high and his platelet count was dangerously low. He was immediately given a platelet transfusion and transferred to a larger hospital. A hematologist diagnosed Kayden with NAIT – neonatal alloimmune thrombocytopenia, and ordered multiple transfusions, with little success. The day that Kayden was scheduled for VP shunt surgery for the hydrocephalus, they found an answer. He was diagnosed with CAMT, congenital amegakaryocytic thrombocytopenia, a rare bone marrow failure disorder that was fatal. His only hope would be a bone marrow transplant. His VP shunt surgery was successful and made the difference the family needed in order to focus on this new, devastating diagnosis.
After thorough research, the family decided to move to Houston, Texas to be near a doctor who had successfully cured two other children with CAMT. A year later on May 8, 2015, Kayden received a bone marrow transplant from an anonymous donor, who matched him perfectly and saved his life. After a month-long stay in the hospital, Kayden came home. Shelby says, “Kayden is thriving! He is almost one-year post transplant and has beat the odds! His blood counts are that of a typical child his age. We still struggle with seizures daily but that’s a work in progress and we’re trying our hardest to eliminate them. His hydrocephalus is also stable. We are working with physical and occupational therapies. He is not quite walking yet but otherwise, he is a lot like your typical almost 2 year old! He has come so far and amazes us every single day!”
Being a special needs mom has changed Shelby’s life completely. She says, “It’s changed my perspective on life and to be humble and grateful. But it’s hard and that’s ok.” The advice that Shelby gives other special needs families is, “Little milestones are big milestones! Don’t be afraid to ask for help, it takes a village.”
The Military Special Needs Network honors and salutes Shelby Nazzario as the Military Spouse of the Day! We thank you for being such a wonderful military spouse and an amazing advocate.
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