Columns

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

May 20, 2020May 18, 2020

I Find Comfort in Believing Loss Can Bring Peace

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

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. ... Read more

May 15, 2020May 13, 2020

Why I’m Feeling Numb

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

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 ... Read more

April 24, 2020April 21, 2020

Finding the Silver Linings in Heartbreaking Moments

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

My 74-year-old mom unexpectedly passed away two weeks ago. It is still surreal to even type that statement. She was such an important presence in my life and my ... Read more

April 22, 2020April 17, 2020

Finding Your Home Base in an Uncertain World

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

My favorite part of writing columns for Sanfilippo News is the opportunity to reach people both in and outside of the Sanfilippo community. In this quarantine, we’re all sort ... Read more

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