Sanfilippo News Columns

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

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 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 8, 2022April 8, 2022

How Aphasia Can Affect Those With Sanfilippo Syndrome

Sanfilippo News Columns

Recently, the family of American actor Bruce Willis announced he has been diagnosed with aphasia. The news has raised some discussion about the condition and how it affects people. Aphasia ... 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 14, 2022March 14, 2022

Emotional Nights at Home With My Sister

Sanfilippo News Columns

Since I moved out of my parents’ house, I love coming home on the weekends. I get so excited driving home and thinking about spending much-needed time with my family. ... 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

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

January 14, 2022January 14, 2022

Spreading Awareness on Social Media During the Pandemic

COVID-19 Columns, Sanfilippo News Columns

It’s hard to believe the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted so many lives ... Read more

January 7, 2022January 7, 2022

I Want to Live in the Moment While There’s Still Time

Sanfilippo News Columns

My daughter Abby has Sanfilippo syndrome, which is a terminal, genetic disorder. She will likely leave this earth before me. That thought alone is quite a lot to absorb and ... 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

December 13, 2021December 13, 2021

Remembering the Holidays Before Sanfilippo

Sanfilippo News Columns

The holidays can be a difficult time for me. My sister, Abby, was diagnosed with Sanfilippo syndrome four years ago, and since then, I find my heart pulled in two ... 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

November 15, 2021November 15, 2021

Am I a Carrier for Sanfilippo Syndrome?

Sanfilippo News Columns

I received a package in the mail last week. It was a test that I will be able to take and send to a lab to find out if I ... Read more

November 12, 2021November 12, 2021

My Daughter Continues to Surprise Me

Sanfilippo News Columns

This is an update to my last column. When we left off, my family was about to leave our home in Houston, Texas, and fly to California, where our daughter ... Read more