Sanfilippo Families Are in This Fight Together

It’s important in all aspects of life to find your people. For example, I have my teacher friends, my college friends, and now, we have our Sanfilippo warriors. When someone you love is living with a rare, terminal disease, it’s an indescribable feeling to find people who are walking a similar path.

As a sibling of an individual with special needs, it’s easy to feel alone. I fell into this trap many times growing up, regardless of the connections I had with other “special sibs.” When Abby was diagnosed with Sanfilippo syndrome, I was even more susceptible to feeling alone. It became even more important to find people who could relate to my life.

However, there’s more to it than just being able to relate. When talking about Sanfilippo specifically, I’ve often felt alone in the fight for a cure. The night Abby was diagnosed, I stayed up on my computer to learn more about this horrible disease. I read studies, looked at the statistics, and automatically felt defeated. How could I, as one individual, contribute to finding a cure for this disease?

Then, I found the Cure Sanfilippo Foundation website. I saw the sweet faces of kids living with Sanfilippo and read about their families. I quickly realized how wrong my mindset was.

My family has hosted two Abby’s Alliance 5K’s since we received her diagnosis. Each event reminds us of the community that surrounds us every day. Our first event was the first time I’d been around several other Sanfilippo families. Talking to others whose lives have been affected by the condition served as a reminder that we are surrounded by people who are fighting the same fight as us.

Recently, I’ve found that feeling on TikTok! There are a few families who have used the platform to spread awareness about Sanfilippo. As I mindlessly scrolled through the app one day, I saw a Sanfilippo family answering questions about the disease. I was with my friends at the time, and I jumped up from excitement. I was so happy to not only see so many people learning about this disease, but to see someone who fights alongside my family.

There are so many emotions that come with being a Sanfilippo sibling, and there are days when I feel that I am fighting a fight that no one else can relate to. It doesn’t always feel like others understand what we’re up against, but connecting with others is an everyday reminder that we do not fight alone.

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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.