Columns

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

December 18, 2019December 16, 2019

Dealing with Jealousy and Other Emotions

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

In this column, I want to focus on a word that has been particularly difficult for me to talk about in the past. While it has synonyms such as ... Read more

December 6, 2019December 4, 2019

Dealing with the Emotional Toll of Sanfilippo Syndrome

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

Parents of terminally ill and special-needs children experience a multitude of emotions. Our feelings lie across a wide spectrum, and sometimes we feel many emotions at once. Each person’s ... Read more

December 4, 2019December 2, 2019

My Advice to Other Sanfilippo Siblings

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

I recently read a column about a teen whose brother has special needs. A lot of what the author said was spot on. She described what I experienced with my ... Read more

November 27, 2019November 25, 2019

Channeling Gratitude Gives an Understanding of Purpose

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

I have a love-hate relationship with the phrase, “Everything happens for a reason.” I understand why people say it and what it means on the surface. But when faced ... Read more

November 22, 2019November 20, 2019

I’m Thankful for the Love and Support We’ve Received

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

This time of year is a good opportunity to take stock of the wonderful people in our lives. Here is my inventory of those to whom I am sincerely ... Read more

November 20, 2019November 18, 2019

Growing Closer with My Dad

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

My relationship with my dad has always been about tough love. He has very high expectations for me, we’re both quick-tempered, and we have plenty of disagreements. When I ... Read more