Columns

March 13, 2020March 11, 2020

Rallying Support to Raise Awareness and Find a Cure for Sanfilippo Syndrome

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

My daughter Abby has Sanfilippo syndrome, a rare and terminal disease with no cure. Every year my husband, Jeff, my other daughter Emily, and I host a 5K walk/run ... Read more

March 4, 2020March 3, 2020

Being a Sanfilippo Sibling Will Make Me a Better Teacher

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

Last week, I passed an exam that will allow me to begin teaching this fall. I thought it would be fitting to reflect on how important teachers have been ... Read more

February 26, 2020February 24, 2020

Finding the Unity in Disability

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

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 ... Read more

February 21, 2020February 20, 2020

Helping My Terminally Ill Daughter Maintain a High Quality of Life

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

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 ... Read more

February 7, 2020February 5, 2020

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

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

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 ... Read more

February 5, 2020February 4, 2020

Spending Quality Time with My Sister, Abby

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

I spent a lot of time with Abby a couple of weeks ago. Her caregiver was sick, so I knew I’d be spending several days with her. I had ... Read more

January 22, 2020January 20, 2020

The Day I Broke Down and Sanfilippo Won

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

It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. Some may argue that feeling low for a few hours shouldn’t ... Read more

January 17, 2020January 16, 2020

Grieving My Living Daughter

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

My daughter, Abby, is 24 and has Sanfilippo syndrome, which will one day claim her life. I already feel like she’s gone, though. I had never even thought of ... Read more

January 8, 2020January 7, 2020

With the New Year Comes Difficult Feelings

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

Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy ... Read more

December 20, 2019December 18, 2019

I’m Struggling with Bitterness This Holiday Season

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

Parenting a terminally ill child carries emotional baggage. It can be subtle or sudden and feel like an extra weight to carry around every day. The feeling of bitterness ... Read more