Mae Patricia Johnston, born on November 28, 2022, entered into eternal rest peacefully in her parents’ arms on March 25, 2024. Mae was surrounded by family and the extraordinary medical team at Maria Fareri Children’s Hospital in Valhalla, NY.
While Mae’s resilient and powerful spirit was shared with us for only a short time, she brought such light, happiness, and pure love to all who knew her.
Mae was born in Middletown, NY, and resided in Goshen, NY, with her parents, Cory M. and Kelly L. Johnston (Mallard), and dog Stout. Presenting early on from birth, Mae was diagnosed with a mutation of her SCN8A gene, causing developmental encephalopathy with refractory epilepsy, a rare disorder causing Mae to endure unimaginable complications.
Despite the challenges Mae had to face, her smile, soft coo, and warmth touched everyone who knew her. Mae enjoyed cuddling, listening to music, splashing in her bath, stroller rides around her neighborhood, and being surrounded by all those who loved her. She reminded us all to slow down, be present in the moment, and cherish every minute.
Mae was a wildflower, so unique and beautiful on the inside and out. With every challenge that Mae faced, her strength and courage was unwavering, her light never dimmed, and her tenacious spirit always shined through.
We will forever carry and cherish the lessons and memories Mae gave to us during the short time we had with her on this earth. We seek to find comfort in knowing she is free from all the burdens she carried, spreading her wings high.
She is survived by her parents Cory and Kelly Johnston; her grandparents Mark and Linda Johnston, and Daniel and Kathryn Mallard; her great grandparents Domenick and Patricia Marinaccio; her aunts and uncle Danielle Mallard-Camillo and husband Brandon, Marlee Johnston, and Connor Mallard; and her cousins Anthony Vargas, Layla Camillo, and Remi Camillo. She is also survived by an extensive family of aunts, uncles, and cousins.
She was predeceased by her great grandparents: Francis and Ann Carney, David Mallard and Patricia Babcock, and Frederick and Patricia Johnston.
Her parents want to extend their deepest gratitude to the many medical staff and providers that gave Mae incredible care and support throughout her life: The Children’s Hospital of Philadelphia, Maria Fareri Children’s Hospital, and Garnet Health Medical Center. Her parents also want to thank her early intervention therapy team and the private duty nursing team that cared for Mae in her home.
Memorial visitation: Tuesday, April 2, from 4 to 8: p.m. at Donovan Funeral Home, Inc, 82 South Church Street, Goshen, NY.
Funeral Mass: Wednesday, April 3, 2024, at 10:15 a.m. at St. John The Evangelist RC Church, 71 Murray Avenue, Goshen, NY.
In lieu of flowers, Mae’s family requests donations be made in Mae’s memory to The Cute Syndrome Foundation at thecutesyndrome.com/donate or by check mailed to PO Box 842 Ozark, MO 65721.