Darren, age 12, is described by his mom, Li Li, as a happy child all of the time. He was diagnosed at a young age with autism, but was social and easy going, loved to travel and play piano which helped with his fine motor skills.
“He received a lot of support and paid back more,” Li Li says. “He bought a snow cone machine and would sell snow cones for his summer holiday to make a hundred dollars so he would make our family ‘rich’.”
In late 2018, Darren was diagnosed with a craniopharyngioma. Post-treatment, Darren suffered from a massive stroke that severely impaired function.
“Darren was a fully functioning child before the surgery,” Li Li tells us. “The biggest challenge is his vision loss and loss of language and mobility due to multiple strokes after surgery.”
During a lengthy hospital stay, Darren, who also suffers from diabetes insipidus (DI), the brain’s inability to produce the antidiuretic hormone vasopressin which causes body fluid imbalances, had to have regular sodium checks. Out of range blood sodium levels, as a result of fluid imbalances, can be fatal. His attending endocrinologist advocated for the family to receive a handheld blood analyzer upon discharge to help them manage his care.
“Because Darren lost his language and is on a feeding tube, we don’t know if he needs water,” said Li Li. “We have to check it regularly to make sure everything is okay.”
The Raymond A. Wood Foundation arranged for the family to receive this device on the day they came home from the hospital.
“Those first days home are so overwhelming,” said Amy Wood, executive director of RAWF and caregiver to a craniopharyngioma survivor with challenging DI. “We wanted to be sure that they had this on hand to ease a little of the challenge of coordinating care at home.”
The blood analyzers are costly and not covered by insurance due to the off-label use. RAWF works to raise funds to provide these life-saving devices to families. To help us continue this important work, please consider making a gift today.