Finding Peace with My Sister’s Diagnosis of Sanfilippo Syndrome

Hi! My name is Emily Wallis. Thanks for checking out my column. I’m excited about the opportunity to provide a window into my life as a Sanfilippo sibling. It’s a perspective that deserves attention, as we have many invisible struggles that are rarely discussed.

One significant aspect of Sanfilippo syndrome is its life expectancy — many of those with the disease don’t live beyond the age of 20. My sister, Abby, is a special case. She turned 24 in August, so she’s much older than most of the Sanfilippo kiddos we know.

I live with my sister, Abby, and my parents, Jeff and Kelly, in Houston, Texas, and I love my home city with all of my heart. I just graduated from Stephen F. Austin State University with a bachelor’s degree in English. I love writing, specifically sportswriting, which combines my passion for sports — I’m a huge Astros fan — with my fascination with words.

I have an amazing family and wonderful friends — you’ll read more about them in future columns. My other loves include music and my dog, Ruby.

My parents and I do our best to spread awareness and raise money for the Cure Sanfilippo Foundation through Abby’s Alliance.

Emily, second from left, with her sister, Abby, and parents, Jeff and Kelly, at the first annual Abby’s Alliance 5K. (Courtesy of Emily Wallis)

I promised myself that I would be brutally honest in this column. So, here it goes.

Growing up, I was not the best sister to Abby. Having a sibling with special needs is difficult, and I struggled a lot with it. I had a short temper with Abby when we were younger. I was frustrated and embarrassed by her outbursts, even when she had minor tantrums. It was a snowball effect: I would become embarrassed or angry, my behavior would go down the drain, and then guilt would settle in. That led to a chip on my shoulder that weighed me down for many years.

Now, I look back on that time with an overwhelming sense of regret. Those outbursts don’t happen anymore due to Sanfilippo. Abby doesn’t tell strangers when her birthday is or talk about a doctor’s appointment during church — two things that used to embarrass the heck out of me. Now, she only knows a few words. I’ve had to find peace, forgiveness, and patience within myself to deal with my past and face what was to come.

At the end of 2015, my life took a turn for the worse. I was starting my senior year of high school when we began noticing a decline in Abby, leading to her eventual diagnosis of Sanfilippo syndrome. Less than two months later, my mom was diagnosed with stage 3 colorectal cancer.

Following these diagnoses, I struggled with guilt, anger, and resentment toward the world. Sanfilippo is a neurodegenerative disease characterized by a slow decline. I still find it hard to accept Abby’s diagnosis. I know that she will eventually lose her speech and other basic skills, such as eating and walking. I can’t help but wonder what will my life look like in five or 10 years. Why was I chosen for this life? None of these questions have easy answers. I realized that finding my peace with this disease was my only choice.

***

Note: Sanfilippo News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.