Initial medical consultations attributed her condition to dyspraxia, dysorthography, and dyscalculia — though these diagnoses could not account for the progressive muscle deterioration that was quietly unfolding. For years, her family navigated a medical landscape that offered names but no answers.
By age 7, Adeline experienced partial hearing loss requiring a hearing aid. At 9, she developed dozens of daily epileptic seizures unresponsive to traditional treatments, necessitating placement in a specialized classroom. By 10, breathlessness during physical activity had eliminated swimming, horseback riding — her favorite — and even a casual game of tag. Falls became incapacitating; she needed assistance with dressing and eating.
On January 19, 2021, at age 11, Adeline received her SMA-PME diagnosis. The name, finally, gave shape to years of uncertainty. But with it came new realities: tremors intensified, seizures increased in intensity while decreasing in frequency, progressing to full convulsions. She began to fear sleep, afraid she might not wake. Her parents cushioned their home with yoga mats to protect against fall injuries — a quiet, heartbreaking act of love.
At ages 12 and 13, medical experts experimented with Vitamin E, idebenone-based medicine, cannabis-based medication, and benzodiazepines — all with only temporary results. No combination has yet delivered a lasting answer.
Through it all, Adeline's parents refuse to let difficulty define her story. They create magical experiences: meetings with her favorite magicians, visits to Disneyland, tours of castles, Harry Potter virtual reality adventures, and special family vacations. Each memory is a declaration — that her life is full, that she is cherished, and that joy can coexist with pain.
