Sanfilippo News Columns

July 26, 2021July 26, 2021

One Drop Can Make an Impact: The Importance of Spreading Awareness

Sanfilippo News Columns

My favorite animals are sharks. They’ve always fascinated me. An interesting fact I’ve learned is that sharks can smell blood in very small concentrations in water — as low as ... Read more

July 20, 2021July 20, 2021

Making Spaces: The Importance of Cultivating Inclusion

Sanfilippo News Columns

Summer — it’s a season of lots of fun, but also lots of difficulty for my family and many others like us. As I wrote last month, my 11-year-old son, ... Read more

July 16, 2021July 16, 2021

Raising an Adult Child With Sanfilippo Syndrome Is Tiring

Sanfilippo News Columns

I am tired. Caring for my 25-year-old daughter, Abby, whose body is giving up on her, is tiring. She has Sanfilippo syndrome, a cruel, relentless disease that is stealing her ... Read more

June 25, 2021June 25, 2021

How Do You Respond to Grief?

Sanfilippo News Columns

I often think about grief, a feeling that everyone experiences at some point in their lives. Whether it involves the loss of a pet, parent, spouse, sibling, child, friend, or ... Read more

June 22, 2021June 22, 2021

The Challenges of Being a Sanfilippo Parent in the Summertime

Sanfilippo News Columns

Y’all. I am tired. My son’s birthday was last week. Will turned 11. This was going to be a column about the bittersweet nature of birthdays when it comes to ... Read more

June 14, 2021June 14, 2021

Sanfilippo Families Are in This Fight Together

Sanfilippo News Columns

It’s important in all aspects of life to find your people. For example, I have my teacher friends, my college friends, and now, we have our Sanfilippo warriors. When someone ... Read more

June 11, 2021June 11, 2021

I Wish I Could Read My Daughter’s Mind

Sanfilippo News Columns

Most parents experience a time when they wish they could read their child’s mind. For example, when children are infants and can’t speak yet, wouldn’t it be great to know ... Read more

May 28, 2021May 28, 2021

Did I Appreciate My Daughter Enough Before Sanfilippo?

Sanfilippo News Columns

Motherhood is a gift. Having the opportunity to raise children is an honor. They need so much care, but they give so much back in return. The love between a ... Read more

May 25, 2021May 25, 2021

The Things We Carry: Welcome to ‘Plot Twist’

Sanfilippo News Columns

Oh, the things my arms have held. I’ve carried my beloved stuffed animals and blankies, my school books and book bags, my moving boxes and furniture, and my babies. Emotionally, ... Read more

May 17, 2021May 17, 2021

Learning to Find Joy in Life as a Sanfilippo Sibling

Sanfilippo News Columns

The four years since my sister, Abby, was diagnosed with Sanfilippo syndrome have been a journey, to say the least. She has lost most of her speech and will continue ... Read more

May 14, 2021May 14, 2021

A Thank-you Note to My Biggest Supporter

Sanfilippo News Columns

Living with an adult child who has a terminal disease is challenging. It demands patience, flexibility, kindness, perseverance, and advocacy. I don’t claim to always possess all of these attributes, ... Read more

April 30, 2021April 30, 2021

What If My Child Did Not Have Sanfilippo Syndrome?

Sanfilippo News Columns

My daughter Abby, 25, has Sanfilippo syndrome. It is a genetic, terminal disorder likened to Alzheimer’s disease. She was not diagnosed until 2017, at the age of 22. However, she ... Read more

April 26, 2021April 26, 2021

My Role as a Sanfilippo Sibling Includes Spreading Awareness

Sanfilippo News Columns

My sister Abby has a rare, neurodegenerative disease called Sanfilippo syndrome. She was diagnosed in 2017, and life hasn’t been the same since. I’ve spent considerable time reflecting on my ... Read more

February 26, 2021February 26, 2021

Let’s Raise Awareness of Sanfilippo Syndrome for Rare Disease Day

Sanfilippo News Columns

My 25-year-old daughter Abby has a rare, terminal disease called Sanfilippo syndrome. The best way to describe the disease is to compare it to Alzheimer’s, but in children. It robs ... Read more

January 15, 2021January 15, 2021

As Abby’s Illness Progresses, My Coping Mechanisms Change

Sanfilippo News Columns

Many parents will agree that our child’s diagnosis with a terminal illness was the worst news we could ever receive. I have been living this reality now for a little ... Read more