Sanfilippo News Columns

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

September 27, 2021September 27, 2021

Channeling My Resentment Toward My Sister’s Disease

Sanfilippo News Columns

In my previous column, I discussed the importance of finding a balance between all of the emotions that come with being a Sanfilippo sibling. There are so many ups and ... Read more

September 24, 2021September 24, 2021

Living in the Space Between Diagnosis and Death

Sanfilippo News Columns

What bookends to live between — diagnosis and death. This is a hard place to be, no matter where you fit in — the patient, the caregiver, or a family ... Read more

September 21, 2021September 21, 2021

This Parent’s Fractured Life, Stitched Back Together

Sanfilippo News Columns

This was my Wednesday afternoon: I’m changing my son’s diaper while talking on the phone with one of his specialists to schedule his annual visit. I glance at the clock ... Read more

September 13, 2021September 13, 2021

Finding Balance Among My Many Emotions

Sanfilippo News Columns

As a Sanfilippo sibling, I experience many emotions every day. Each feels like a weight on my shoulders, and it takes a balanced mindset to juggle all of them. This ... Read more

September 10, 2021September 10, 2021

Lessons Learned From Unanticipated Positive Outcomes

Sanfilippo News Columns

This is a follow-up to my previous column about my 26-year-old daughter, Abby, potentially being accepted into a clinical trial. To recap, my husband and I were recently notified that ... Read more

August 24, 2021August 24, 2021

Some Kids Might Go to College in Diapers

Sanfilippo News Columns

“Don’t worry, they won’t go to college in diapers!” It’s the statement so many people give to parents as they go through the often difficult adventure of potty training. In ... Read more

August 16, 2021August 16, 2021

My Sister Can’t Verbally Communicate, but Her Eyes Tell a Story

Sanfilippo News Columns

The photo below is one of my favorites of my sister and me. It was taken at my grandparents’ house several years ago, and it often brings me comfort because ... Read more

August 13, 2021August 13, 2021

Sanfilippo Can Get in the Way of Celebrating

COVID-19 Columns, Sanfilippo News Columns

I recently received exciting news! My 26-year-old daughter, Abby, has been selected to potentially participate in a clinical trial for a drug to help manage or minimize symptoms of her ... Read more

July 30, 2021July 30, 2021

Helping Others During Times of Grief

Sanfilippo News Columns

Grief has been a prevalent part of my life for the past year or so. My mom unexpectedly passed away early last year, and because of the pandemic, her burial ... Read more

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