Posts by: Prudence Jones

Prudence Jones

September 24, 2021September 24, 2021

Baby Emelia Brings a ‘New Normal’ to Our Family

COVID-19 Columns, Muscular Dystrophy News Columns

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 ... Read more

August 13, 2021August 13, 2021

Why It’s Important to Be Honest About Daily Struggles

Muscular Dystrophy News Columns

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 ... Read more

July 30, 2021July 30, 2021

The People We’ve Met Due to My Son’s Disability Are a Blessing

Muscular Dystrophy News Columns

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. ... Read more

July 16, 2021July 16, 2021

The Excitement and Fear That Come With Giving Your Child a Sibling

Muscular Dystrophy News Columns

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. ... Read more

June 25, 2021June 25, 2021

Caring for My Son Helps Me Continue Being a Lifelong Learner

Muscular Dystrophy News Columns

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 ... Read more

June 11, 2021June 11, 2021

Despite My Initial Fears, I Now Praise the Feeding Tube

Muscular Dystrophy News Columns

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 ... Read more

May 28, 2021May 28, 2021

Grieving the Challenges That Lie Ahead for My Son

Muscular Dystrophy News Columns

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 ... Read more

May 14, 2021May 14, 2021

Helping My Son Conserve Energy Is a Constant Juggling Act

Muscular Dystrophy News Columns

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 ... Read more

April 23, 2021April 23, 2021

Why It’s So Important to Find Your People

Muscular Dystrophy News Columns

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 ... Read more

March 26, 2021March 26, 2021

What a ‘Typical’ Day Is Like for My Son, Alfie, and Me

Muscular Dystrophy News Columns

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. ... Read more

March 12, 2021March 12, 2021

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

Muscular Dystrophy News Columns

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 ... Read more