A woman whose rare genetic disorder means her “back is a sheet of bone”, her jaw is “locked”, and she has to use a wheelchair has said she does not let the disease hold her back as she dreams of starting a family, finding her “forever home”, and going swimming again. Carli Henrotay, 27, was diagnosed with fibrodysplasia ossificans progressiva (FOP) – a rare genetic connective tissue disorder characterised by the abnormal development of bone – when she was five years old, and she said she is effectively “growing a second skeleton”.
Following her diagnosis, the Missouri blogger said she had to adapt to a new way of life, as trauma, such as a fall or an invasive medical procedure, could result in bone growth. “The advice my doctor gave my parents was to make sure I’m careful but still enjoy being a child… so we just found safer ways for me to interact with the world,” Carli said.
Carli’s jaw then “locked” when she was seven years old, and years later, after various accidental falls, she lost mobility in her left knee and hip, leaving her unable to walk. While she now has to use a wheelchair, can no longer drive or get out of bed without assistance, and experiences “some level of pain in (her) body 24/7”, Carli said she focuses on what she can do with the help of her family, boyfriend, and assistance dog and “sidekick”, Patience.
