Bloom – a Column by Prudence Jones

Prudence is a caregiver and loving mother to her two-year-old son, Alfie, who is affected with LAMA2-related muscular dystrophy. Prudence is married to Alfie’s dad, Rylan, and they all live together in Tamworth, NSW, Australia. Before Prudence became a mum she was a primary school teacher, but since Alfie’s diagnosis she has been immersing herself in trying to learn as much as she possibly can about LAMA2, raising awareness and educating others on what parenting a child with muscular dystrophy entails.

Why It’s So Important to Find Your People

When Alfie was first diagnosed, I went searching. I needed answers. I needed to know that my little boy would be OK. I searched every website and every social media platform. Some days I got so obsessed that I’d have to force myself to stop.

What I’ve Learned Since My Son’s LAMA2 MD Diagnosis

On Oct. 21, 2019, I sat in a doctor’s office with my 11-month-old son, Alfie, and was handed a piece of paper. Nothing was said, nothing was explained — I was just given the paper. This piece of paper included words such as “severe,” “deformities,” “insufficient,” “seizures,” “inability to…