Mum’s shock as daughter’s condition is so rare doctors had never heard of it – SWNS

Paul and Nahomi, Rafaella's parents, face a difficult situation after receiving their daughter's diagnosis: Spinal Muscle Atrophy (AME), a rare and progressive genetic disease that affects muscle mobility and strength.

Mum’s shock as daughter’s condition is so rare doctors had never heard of it – SWNS

A mum-of-three has spoken out about her shock after her daughter was diagnosed with an ultra rare genetic disease which only affects hundreds worldwide. Florence Violet, aged just six months, was diagnosed with CHAMP1 in spring last year after her …