Sanfilippo News Columns

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

December 2, 2020December 2, 2020

Grief Is an Unwelcome Visitor During the Holidays

Sanfilippo News Columns

This year’s Thanksgiving was difficult. I lost my grandmother in March, so grief overshadowed a lot of the gratitude that should be at the forefront of this holiday for me. ... Read more

October 30, 2020October 30, 2020

The Roller Coaster of Parenting a Special Needs Child

Sanfilippo News Columns

Raising a special needs child is challenging. It is physically tiring and emotionally draining. But it is incredibly rewarding, too. Some days leave me feeling like I know nothing and ... Read more

October 22, 2020October 22, 2020

Living My Own Life as a Sanfilippo Sibling

Sanfilippo News Columns

You live with many fears when a family member is diagnosed with a terminal disease. However, there is a specific fear that comes with being the sibling: What if I ... Read more

September 23, 2020September 23, 2020

My Sister’s Sanfilippo Syndrome Makes Our Relationship Unique

Sanfilippo News Columns

Since moving out of my house and away from my sister, I’ve been more cognizant of making sure she knows I love her. It’s hard to know if she understands ... Read more

September 11, 2020September 11, 2020

My Project to Remember and Honor Sanfilippo Angels

Sanfilippo News Columns

For a parent, the worst thought in the world is losing a child. The love a parent has for his or her child is unceasing. Bringing a human being into ... Read more

August 19, 2020August 19, 2020

When Do I Tell New Friends About My Sister’s Diagnosis?

Sanfilippo News Columns

It has always been relatively easy to make new friends. I take kindness very seriously, and I try to be as friendly as humanly possible. The hard part isn’t striking ... Read more

August 5, 2020August 6, 2020

Sanfilippo Syndrome Robs Me of Closure

Sanfilippo News Columns

I have an interesting relationship with my sister, Abby. Because she has special needs, our relationship has always been rocky. I often would become jealous of the extra attention she ... Read more

July 24, 2020July 24, 2020

Music Brings My Daughter Back to Me

Sanfilippo News Columns

My 24-year-old daughter, Abby, has a terminal disease called Sanfilippo syndrome. It is likened to childhood Alzheimer’s. Children with this disease gradually lose all speech, motor, and cognitive abilities until ... Read more

July 22, 2020July 22, 2020

It’s Time to Deal with My Anxiety

Sanfilippo News Columns

I’ve known for a long time that I have anxiety. For obvious reasons, it hit an all-time high when my mom was diagnosed with cancer and my sister with Sanfilippo ... Read more

July 10, 2020July 10, 2020

Caregivers Should Take Time to Restore and Renew

Sanfilippo News Columns

The role of caregiver is a sacred responsibility. Caring for someone whose well-being rests solely upon you is an incredibly meaningful job. And it is a necessity, as there will ... Read more

June 17, 2020June 17, 2020

Feeling Guilty About Moving Away as a Sanfilippo Sibling

Sanfilippo News Columns

I recently accepted a teaching position out of town, and am moving into a new apartment this week. As exciting as this is, I can’t help but be sad about ... Read more

June 12, 2020June 12, 2020

When Pushing Forward Is the Only Direction to Go

Sanfilippo News Columns

Loss is a theme that persistently has occupied my thoughts lately, not only because of current events in the world, but also because of my personal life. At 24, my ... Read more

June 3, 2020June 3, 2020

Life Never Stops with Sanfilippo Syndrome

Sanfilippo News Columns

The current state of the world is difficult for everyone. I’ve thought a lot about my sister, Abby, my family, and other Sanfilippo families. It’s been the perfect time to ... Read more