Sanfilippo News Columns

July 19, 2022July 19, 2022

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

Sanfilippo News Columns

“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

July 18, 2022July 18, 2022

For Many Sanfilippo Families, Summer Is Emotionally Challenging

Sanfilippo News Columns

I’m a teacher, so the word “summer” invokes thoughts of relaxation and letting go of responsibilities. During summertime, many people take advantage of the time off and go on vacation ... Read more

July 8, 2022July 8, 2022

How Does Sanfilippo Syndrome Affect My Daughter’s Awareness?

Sanfilippo News Columns

My cancer has returned. My schedule is filled with chemotherapy and doctor appointments again. Currently, I receive chemotherapy infusions every other week, and my understanding is that this will be ... 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

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 3, 2022June 3, 2022

We Live in a World Full of Gray — Embrace It

Sanfilippo News Columns

We do not live in a world of absolutes, a world of only black and white, right or wrong, good or bad. Instead, there are mostly shades of grays, or ... Read more

June 3, 2022June 22, 2022

We Live in a World Full of Gray — Embrace It

Sanfilippo News Columns

We do not live in a world of absolutes, a world of only black and white, right or wrong, good or bad. Instead, there are mostly shades of grays, or ... 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

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 6, 2022May 6, 2022

The Challenges of Caring for an Adult With Sanfilippo Syndrome

Sanfilippo News Columns

Sanfilippo syndrome is a rare, genetic disease that typically presents itself in children when they are either toddlers or adolescents. Children with this disease commonly exhibit hyperactivity, cognitive decline, sleep ... Read more

May 6, 2022June 22, 2022

The Challenges of Caring for an Adult With Sanfilippo Syndrome

Sanfilippo News Columns

Sanfilippo syndrome is a rare, genetic disease that typically presents itself in children when they are either toddlers or adolescents. Children with this disease commonly exhibit hyperactivity, cognitive decline, sleep ... 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

April 18, 2022April 18, 2022

When I Think of My Family, I Often Worry

Sanfilippo News Columns

I have always struggled with anxiety. I have also always been close to my family. When my sister, Abby, was diagnosed with Sanfilippo syndrome — a terminal illness with no ... Read more

April 18, 2022June 22, 2022

When I Think of My Family, I Often Worry

Sanfilippo News Columns

I have always struggled with anxiety. I have also always been close to my family. When my sister, Abby, was diagnosed with Sanfilippo syndrome — a terminal illness with no ... Read more