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Story from Sophia
Sophia Granger – Portland, Oregon
Lost: Her daughter, Ivy (diagnosed at 17, died at 21)
Sophia never imagined ALS in a teenager. Ivy was a track star, glowing with life. The first sign? Slurring. Then a leg that dragged behind. When Ivy couldn’t tie her shoes, they assumed stress, overtraining. But a brutal truth unraveled: Juvenile ALS.
Sophia sat with Ivy in hospital rooms where every other patient had gray hair. She had to explain to doctors, to teachers, to herself — how her teenager was dying.
Ivy begged to go to prom. Sophia found a way — an accessible limo, custom wheelchair gown, and a ventilator battery packed in her purse. Ivy smiled through an oxygen mask, telling her mom, “This is still the best night of my life.”
The next month, she lost the ability to swallow. Sophia stayed up every night listening to machines beep, fearing silence more than sound. Ivy passed in her sleep. Sophia woke up to find her daughter's head tilted, eyes half open, like she was dreaming mid-sentence.
Now, Sophia teaches other caregivers how to hold on — and how to let go.
#AngelmanSyndrome #AutonomicDysfunction #ChronicFatigueSyndrome #GuillainBarreSyndrome #JointHypermobilitySyndrome #MyalgicEncephalomyelitis #Ataxia #PituitaryGlandTumor #ALSLouGehrigsDisease #CerebralPalsy
