My Role as a Sanfilippo Sibling Includes Spreading Awareness

My sister Abby has a rare, neurodegenerative disease called Sanfilippo syndrome. She was diagnosed in 2017, and life hasn’t been the same since.

I’ve spent considerable time reflecting on my role as her sister, not only as a Sanfilippo sibling, but also as an advocate to spread awareness of this disease.

In church last week, we prayed specifically for people who are sick. My first thought was my grandfather, who is currently in the hospital. After church, I thought, why didn’t I think of Abby, too? I was beating myself up about not thinking of her, and I continued to reflect on it throughout the day.

I tell many different people about my sister — co-workers, friends, neighbors, doctors, and anyone else who will listen. Sometimes I’ll work it into the conversation, while other times the person will notice my Abby’s Alliance bracelet, from the advocacy group we started to help support Abby and raise awareness about the disease.

Regardless, I make an effort to have the Sanfilippo conversation with everyone I meet. This is a rare disease, and Sanfilippo families work every day to reach as many people as they can to make others aware of it.

After reflecting on my time at church, I realized that Sanfilippo is my normal. It doesn’t always feel like something that needs to be shared or talked about. It’s just my life as Abby’s sister.

So, what can I do about it? I have to stay out of that mindset of “normal.” One day, no other family will ever have to experience our normal. No other family will have to watch their daughter, son, sister, or brother lose basic life skills. It is my job to do everything I can, as one Sanfilippo sibling, to ensure that.

We cannot allow ourselves, as advocates for a cure, to be inactive. Sanfilippo is a disease. We have to wear the bracelets, share the videos, attend the walks, and make a conscientious effort to spread awareness about it. I caught myself overlooking this job as a Sanfilippo sibling.

Being a Sanfilippo sibling has contributed to who I am today. It affects all aspects of my life. My relationship with Abby makes me a better person. Abby and I fill our time together with music, dancing, laughter, and Disney movies.

However, my time is also spent assisting her with things like eating, going to the bathroom, and getting dressed. A camera sits by the couch every night where my parents watch Abby to make sure she is OK in her bedroom. From the moment she wakes up to the moment she closes her eyes, Abby needs assistance. That’s every second of every day.

Life with Sanfilippo does not stop. It’s easy to allow it to become normal, but I was reminded of how important it is to push for awareness and eventually, a cure.

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Note: Sanfilippo News is strictly a news and information website about the syndrome. 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, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.