Amelia's Story

When Amelia was born, she didn’t cry and was finding it hard to breathe. Mum Emily was told Amelia had been born with a cleft palette and club foot and needed some genetic testing. Emily was left sobbing on the operating table as Amelia was taken to NICU. “I was taken back to the ward, without my baby. I was surrounded with new mums. But I was on my own.”

Amelia was diagnosed two and a half weeks later with Nemaline Myopathy type 2: a rare genetic neuromuscular disorder that affects the muscular cells. “When we got the diagnosis I just sobbed. I sat and cried in the toilet. I didn’t want anybody to hear me.”

For support and help, Amelia’s family have found sanctuary in their local hospice Keech Hospice Care: “They scooped us up into a giant hug. They are angels. Keech isn’t just a place for us to go, the people there are our friends, a part of our family."