Posts by: Valerie Tharp Byers

Valerie Tharp Byers

July 19, 2022July 19, 2022

As My Son With Sanfilippo Syndrome Slows Down, Time Speeds Up

“Will’s just doing so well,” a well-intentioned person gushes to me. I smile, happy for the attention and recognition Will receives for his hard work. “I just see him up ... Read more

June 21, 2022June 22, 2022

As a Sanfilippo Caregiver, Summer Means a Changing of the Rings

Sanfilippo News Columns

I look down at my hand and back at my face in the mirror. It’s time. I sigh and take off the diamond and white gold wedding band that I ... Read more

June 21, 2022June 21, 2022

As a Sanfilippo Caregiver, Summer Means a Changing of the Rings

Sanfilippo News Columns

I look down at my hand and back at my face in the mirror. It’s time. I sigh and take off the diamond and white gold wedding band that I ... Read more

May 24, 2022June 22, 2022

It’s 1 AM, so I Must Be Tired

Sanfilippo News Columns

It’s 1 a.m. on a Wednesday, and I’m sitting in my living room debating my options while listening to my 11-year-old son repetitively clap and growl over the baby monitor ... Read more

May 24, 2022May 24, 2022

It’s 1 AM, so I Must Be Tired

Sanfilippo News Columns

It’s 1 a.m. on a Wednesday, and I’m sitting in my living room debating my options while listening to my 11-year-old son repetitively clap and growl over the baby monitor ... Read more

April 19, 2022April 19, 2022

What Will Our Daughter Remember?

Sanfilippo News Columns

Parenting a child with Sanfilippo syndrome results in many forms of grief. There is the diagnosis grief, when you mourn the loss of the future you thought your child had. ... Read more

April 19, 2022June 22, 2022

What Will Our Daughter Remember?

Sanfilippo News Columns

Parenting a child with Sanfilippo syndrome results in many forms of grief. There is the diagnosis grief, when you mourn the loss of the future you thought your child had. ... Read more

March 22, 2022March 22, 2022

Moving From Helpless to Helped

Sanfilippo News Columns

One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo ... Read more

March 22, 2022June 22, 2022

Moving From Helpless to Helped

Sanfilippo News Columns

One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo ... Read more

February 22, 2022February 22, 2022

Our Miracle Is Already Here

Sanfilippo News Columns

While we may not be talking about Bruno, it’s no secret that Disney’s latest animated offering, “Encanto,” is on the tip of many tongues, especially in families with young children ... Read more

February 22, 2022June 22, 2022

Our Miracle Is Already Here

Sanfilippo News Columns

January 25, 2022January 25, 2022

The Gift of Grief Is Connection

Sanfilippo News Columns

March 5, 2015, was the worst day of my life. I had stumbled upon a story from the “Today” show about a little girl with Sanfilippo syndrome, and my heart ... Read more

December 21, 2021December 21, 2021

When Help Isn’t Helpful

Sanfilippo News Columns

A few years ago, I was chatting with a friend who was the primary caregiver for a family member with a terminal condition. Even though our stories were different, we ... Read more

November 23, 2021November 23, 2021

I Mustache You, Do You See Me?

Sanfilippo News Columns

It happened. It came on so gradually I didn’t even comprehend what was happening until it was there. But there is no denying it now: Will has a mustache. I ... Read more

October 19, 2021October 19, 2021

A Sanfilippo Parent Looks at 40

Sanfilippo News Columns

I was sore. It was nothing major, just the usual muscle aches following a good workout when you’ve been off for a while. It was late August, and the kids ... Read more