Jordan and Julia
Parents of Caleb, Avery and Nolan.
Avery had Early Infantile Epileptic Encephalopathy as a result of a mutation in her UBA5 gene. She died at age 2 months.
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“We were not ready for her actual diagnosis.”
“To have the fortitude to push the medical team, from whom you are looking for an honest answer, was so frustrating.”
Wondering if your child is going to be the exception. “There are always those cases.”
A mother on the agonizing decision to transition to Hospice Care: “It felt like nobody talks about it.”
