rare genetic mutation

‘I was suddenly watching her monitor flat-line. Countless nurses rushed to save her. It happened 20 times that day.’: Mother shares traumatic process diagnosing daughter with Adrenal Insufficiency

“I never planned to be a medical expert, or to have to inject my daughter to save her life. Ten times I’ve swallowed back tears while holding my limp child in my arms; remembering each step to prepare the syringe; taking a deep breath as I jab it into her thigh; praying she will jolt awake, open her eyes, and come back to life.”

‘They laugh when you flap your arms. They think you’re stupid. But you were created special on purpose.’: Mom of daughter with Rett Syndrome details emotional moment grandma’s love quiets her symptoms

“You see, my daughter’s syndrome doesn’t allow you to touch her face or hands. That day, I saw Ivy on the love seat with granny. They both leaned in, foreheads touching, and granny was holding Ivy’s hands and face! Ivy was SMILING and listening to granny quietly speak. ‘You are special. You are good enough. You are different…on purpose.’ No matter the diagnosis or prognosis, I KNEW my Ivy heard granny and understood.”

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