Bostyn is a 6 year old craniopharyngioma survivor who suffers from difficult to manage diabetes insipidus
Bostyn was diagnosed and treated for a craniopharyngioma brain tumor in the summer of 2021 and since then, daily labwork has been a requirement to manage diabetes insipidus, a condition, caused by the tumor or treatment, where the brain can no longer manage the body’s fluid balance. This can cause high or low blood sodium which can be fatal if not managed properly, but management of this condition is tricky.
“The biggest challenge of this journey has been the unknown,” says mom, Megan. “Bostyn’s condition is life threatening if not monitored and cared for properly. I have had to take time off from work dozens of times, sometimes for a month at a time.”
Bostyn is described as a spunky six-year-old girl who has taken on the challenges of her medical conditions with grace. Although her condition is scary and overwhelming, she continues to walk through it with a smile on her face and minimal complaints. Bostyn is very loving, caring, and passionate. She loves to color, play with melt-a-beads, do diamond art, and enjoys spending time with her family. Megan says she is a diva in every sense!
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““I am beyond grateful for this opportunity to restore a little more regularity in my family’s daily living,“ concludes Megan.”
Megan describes the financial strain of Bostyn’s condition which began the day of being admitted to the hospital for unknown reasons and discovering the tumor, and hasn’t stopped since. On top of having to take time off from work, there have been dozens of medical bills, costs of transportation, housing, and basic needs for multiple trips to Boston Children’s Hospital. Aside from the financial burden, Megan’s other children have had to go without seeing her for days to weeks due to multiple trips to Boston.
“It has been a major challenge to have to regularly go to the hospital for Bostyn’s lab work, as it is 45 minutes from my house,” Megan states. “Bostyn has struggled with her food/liquid intake, oftentimes sneaking liquids, resulting in her labs being affected.”
Bostyn’s endocrinologist determined a handheld blood analyzer at home would be a solution and advocated for the family to receive one. Being able to test sodium at home will be a tremendous support for Bostyn and her caregivers to better manage this condition, avoid daily lab trips and lengthy hospital stays and will keep Bostyn home with her family.
“I am beyond grateful for this opportunity to restore a little more regularity in my family’s daily living,“ concludes Megan.
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