Columns

November 15, 2019November 13, 2019

My Faith Has Been Tested by My Daughter’s Diagnosis

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

Do you ever feel like your faith is being tested? Like God is trying to see how much you can take? I don’t think God is malicious and means ... Read more

November 8, 2019November 6, 2019

Feeling Isolated While Parenting a Sanfilippo Child

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

Raising a special-needs child can be isolating. You think no other child is like yours, and other parents won’t understand the daily challenges you face. When I thought my ... Read more

November 6, 2019November 6, 2019

Sanfilippo Weighs on My Relationships

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

This week, I want to shed some light on a special group of people who carry me through this trying and emotional life as a Sanfilippo sibling: my friends. ... Read more

November 1, 2019October 30, 2019

Parenting Siblings with Different Needs

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

Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing ... Read more

October 30, 2019October 29, 2019

How Sanfilippo Syndrome Has Shaped My Concept of Sisterhood

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

Earlier this year, I wrote a post called “Special Sisters.” For this week’s column, I want to expand on some of the things I said about my special relationship ... Read more

October 25, 2019October 23, 2019

Please Ask Me About My Child

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

People often don’t like talking about sad topics. They probably feel they lack adequate words. Most want to offer advice, or say something to make another person’s life better. ... Read more

October 23, 2019October 21, 2019

My Faith Brought Me Comfort at a Turning Point in My Life

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

I have had many turning points in my life. I often divide my existence into “before” and “after” my mom’s and sister’s diagnoses, but I experienced another transformation after ... Read more

October 18, 2019October 17, 2019

My Daughter Has a Terminal Illness. Now What?

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

My daughter Abby was diagnosed with Sanfilippo syndrome almost two years ago. It took a while to live with the shock of the diagnosis. Not long before she was ... Read more

October 16, 2019October 15, 2019

The Devastating Phone Call that Confirmed My Sister’s Diagnosis

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

No two diagnosis days are the same. The day the phone rings with news of a diagnosis hits everyone differently, even among members of the same family. I remember ... Read more

October 11, 2019October 8, 2019

My Daughter’s Journey to a Diagnosis

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

My daughter Abby was 22 when she was diagnosed with Sanfilippo syndrome. We were devastated. Like any other significant event, things are now classified as “before” or “after” the ... Read more