I’m a glass-half-full kind of girl. It’s usually not difficult for me to look on the bright side of life. Recently, I had one of those days where everything felt right. We are on top of my 2-year-old son Alfie’s therapies, he is loving day care, the equipment he…
Bloom — 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.
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In August, my 2-year-old son, Alfie, became a big brother. While bringing a new baby into the world is an important life event for any family, when you are already raising a child with LAMA2-related muscular dystrophy, there can be even more to contend with. For about six…
My 2-year-old son, Alfie, lives with LAMA2-related muscular dystrophy. Obviously, it is hard, stressful, and heartbreaking to raise a child with a disability. I wouldn’t wish this condition upon anyone. From his premature birth to his diagnosis, the experience has been a huge learning curve for us, to say…
Most weeks, I toss around column ideas with my friends and family, asking them for advice on what they think could be important or interesting for me to write about. Last week, my husband said, “Umm, how about the fact that you’re heavily pregnant and Alfie is about…
Before my 2-year-old son, Alfie, was born, I was a primary school teacher. While I still work occasionally on a casual basis, it’s a much smaller part of my life than it once was. One of my favorite things about being a teacher was the constant learning — and…
Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric (NG) tube that previously passed down his nostril and throat. Alfie first had an NG tube for…
Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find the best fit for Alfie when he turns 3 and is able to go. I was…
Growing up, I was never good at performing tricks. I couldn’t whistle, I’ve never been able to cartwheel, and I’ve always been terrible at juggling. Now, every day is the hardest juggling act of all. One of the most important aspects of caring for…
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.
BEEP BEEP BEEP BEEP. My eyes spring open. It’s still dark. It’s not my alarm that I hear. “Wake up!” I say as I roll over and poke my husband. It’s time for him to go to work. This is how…
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…
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