05/16/2026
💛Meet Maisie: a beautiful baby girl, just 5 months old, who was diagnosed with PMM2-CDG; autosomal recessive metabolic disorder of glycosylation, caused by mutations in the gene. It causes severe multisystem issues, including neurological deficits (hypotonia, ataxia), cerebellar atrophy, and developmental delays. Mortality rate is roughly 20% in the first year of life. Affects roughly 1 in 50,000–100,000 individuals.
Maisie just had surgery at Columbia for a Gtube to help her eat. Thankfully, the surgery was very successful.
Ryan’s Foundation provided the family with gas cards for their commute to and from the hospital, as well as a months supply of Button Huggies, which are a skin-friendly protective accessory designed to help keep gastrostomy buttons comfortably in place throughout daily activities and feedings.
Please keep Maisie and her family in your thoughts and prayers. God bless 🙏🏻💛