Mom Opens Up About Tough Choice After Baby's Rare Genetic Diagnosis

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News (1 / 1) 19.09.2026 23:04 / Simo

When Kaylee Massey brought newborn Poppy home in February 2022, everything seemed normal — until little signs grew into a frightening medical picture and the family faced impossible decisions. Read on to discover the full story!

Early signs and a rare diagnosis

Poppy began showing vision delays by about four months. Imaging found problems with her corpus callosum and further testing revealed microcephaly and cerebral visual impairment. Genetic testing later confirmed TBCD leukodystrophy, a rare disorder affecting the brain and nervous system, with the diagnosis coming when Poppy was nine months old.

A swift, heartbreaking decline

After the diagnosis, Poppy’s condition worsened quickly. In roughly six months she lost the ability to suck and feed independently, then lost movement in her legs and most use of her arms, leaving her with very limited mobility and requiring palliative care focused on comfort.