Sanfilippo News Columns

September 23, 2020September 23, 2020

My Sister’s Sanfilippo Syndrome Makes Our Relationship Unique

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

May 20, 2020May 20, 2020

I Find Comfort in Believing Loss Can Bring Peace

Sanfilippo News Columns

I’ve experienced several defining moments in my life over the last five years. My mom was diagnosed with cancer in 2015 as my senior year of high school began. We ... Read more

May 15, 2020May 15, 2020

Why I’m Feeling Numb

COVID-19 Columns, Sanfilippo News Columns

Do you ever feel like you are walking through life with no emotion? Getting up each day, going through your routine, but with little emotion attached to any part of ... Read more

February 26, 2020May 6, 2020

Finding the Unity in Disability

Sanfilippo News Columns

If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, ... Read more

February 21, 2020May 6, 2020

Helping My Terminally Ill Daughter Maintain a High Quality of Life

Sanfilippo News Columns

My daughter Abby has a terminal illness called Sanfilippo syndrome. This condition has stolen so much of Abby from our family. Witnessing her decline is extremely hard. It is difficult ... Read more

February 7, 2020May 6, 2020

Thank You for the Kind Words, but I Am Not a Hero

Sanfilippo News Columns

I am raising a terminally ill child, my daughter, Abby. This has caused many to call me a hero, warrior, or fighter, among other things. While these are flattering terms ... Read more