Noah MayNo LongerBe Here,But His Story Can Save Lives.

Titinopathies are a group of genetic muscle diseases caused by mutations in the titin (TTN) gene. They can cause severe muscle weakness, respiratory failure, and congenital complications.

Mothers may notice little or no movement late in pregnancy. Babies are often born struggling to breathe and require immediate NICU support.

Diagnosis requires whole-exome or targeted genetic sequencing. Many families face long, painful waits while doctors investigate.

If you have any concern — reduced movement, family history, or instinct — request genetic counselling and detailed monitoring. You are entitled to ask.

Awareness saves families from chaos. It gives parents agency, hospitals readiness, and babies the best possible care.

We connect families to specialist consultants, support groups, and one another — so no one walks this road alone.