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.
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Seth, who has Sanfilippo Syndrome. Here's how the Karlsons' lives have changed because of the Coronavirus - and why you should stay home for Seth. Read More