Natalie and John are living a nightmare no parent should ever face. Their 17-year-old daughter, Morgan—lovingly called Pie (short for Pumpkin Pie)—has Phelan-McDermid Syndrome, a rare genetic disorder that affects nearly every part of her daily life. She has always needed extra care, but nothing could have prepared them for the sudden, devastating decline in her breathing that has now put her life in danger.

Pie has severe obstructive sleep apnea and chronic CO₂ retention. In the past few weeks, her CO₂ levels climbed so high that she went into respiratory distress, her airway collapsed, and she came terrifyingly close to not making it. Twice, paramedics had to rush in and save her life. Now she’s in the PICU at Wolfson’s Children’s Hospital, intubated and on a ventilator, fighting every single day to stay stable.

Because of her sensory and sensitivity challenges, she hasn’t been able to tolerate BiPAP, which would normally help her breathe. That makes her entirely dependent on the ventilator right now, and every attempt to wean her off has been incredibly difficult. No one knows how her body will respond or when she’ll be strong enough to even try for extubation. The uncertainty of her future hangs over every moment.

Natalie hasn’t left her daughter’s bedside in nine days. In that time, she’s watched Pie’s oxygen levels crash into the 30s, seen teams of doctors rush in to save her, and sat through meeting after meeting with neurology, pulmonology, genetics, and critical care—each conversation layered with questions, fear, and no clear answers. Pie keeps fighting, but the road ahead is long, complicated, and unpredictable.

And while Natalie stays by Pie’s side, she and John are trying to be present for their other daughter at home, who is scared, confused, and missing her mom and sister more than ever.

Natalie is a wound-care and pediatric nurse who has dedicated her career to caring for medically fragile children. Now she’s the one in the hospital with her own medically fragile child, and she’s been without income for nine days to make sure Pie is never alone. With the holidays approaching and Morgan’s condition so uncertain, the financial strain has become overwhelming.

Any support—whether it’s sharing their story, sending prayers, or donating—means more to this family than words can express. They’re holding onto hope while facing one of the hardest moments of their lives.

Anonymous

SHAWN GORNEY

Denise Keller

Gail Gifford

Emily Daubney

Maria Massa

John Michne

Miriam Rowen

Thomas Macikowski

Janice Oakes

Catherine Stirrat

Jill Belcher

Sara Greenlaw

Jason Warburg

Erika Baker

Amy Smith

Kelly Maguire

Jennifer Randolph

Help Support Morgan (“Pie”) and Her Family Through This Medi

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