This blog was written by Emily Wallis on Sanfilippo News. She has written many blogs about her experience as a Sanfilippo sibling and I would encourage you to read more.
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.
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.
It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. I lacked motivation to do anything, go anywhere, or be around anyone for a while. Every bit of stress and each unanswered question about my life were at the forefront of my mind. When a wave of sadness hits like that, it holds me captive. Read More
You may not know that President George W. Bush, like us, is a super sibling. His sister died from Leukemia at age three. Over MLK weekend, the Bush family was at my family's favorite vacation spot and I decided to ask him for an interview on my new podcast. I walked up to the former president, my heart pounding, and pitched him my idea. Read More