Columns

September 23, 2020September 21, 2020

My Sister’s Sanfilippo Syndrome Makes Our Relationship Unique

Columns, Finding My Peace with Sanfilippo – a Column by Emily Wallis

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 ... Read more

September 11, 2020September 9, 2020

My Project to Remember and Honor Sanfilippo Angels

Columns, Parenting a Sanfilippo Child – a Column by Kelly Wallis

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 ... Read more

August 19, 2020August 17, 2020

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

Columns, Finding My Peace with Sanfilippo – a Column by Emily Wallis

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 ... Read more

August 5, 2020August 3, 2020

Sanfilippo Syndrome Robs Me of Closure

Columns, Finding My Peace with Sanfilippo – a Column by Emily Wallis

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 ... Read more

July 24, 2020July 23, 2020

Music Brings My Daughter Back to Me

Columns, Parenting a Sanfilippo Child – a Column by Kelly Wallis

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 ... Read more

July 22, 2020July 20, 2020

It’s Time to Deal with My Anxiety

Columns, Finding My Peace with Sanfilippo – a Column by Emily Wallis

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 ... Read more

July 10, 2020July 8, 2020

Caregivers Should Take Time to Restore and Renew

Columns, Parenting a Sanfilippo Child – a Column by Kelly Wallis

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 ... Read more

June 17, 2020June 16, 2020

Feeling Guilty About Moving Away as a Sanfilippo Sibling

Columns, Finding My Peace with Sanfilippo – a Column by Emily Wallis

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 ... Read more

June 12, 2020June 10, 2020

When Pushing Forward Is the Only Direction to Go

Columns, Parenting a Sanfilippo Child – a Column by Kelly Wallis

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, ... Read more

June 3, 2020June 1, 2020

Life Never Stops with Sanfilippo Syndrome

Columns, Finding My Peace with Sanfilippo – a Column by Emily Wallis

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 ... Read more

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