Outside, the world is pressing forward; inside, progress is still

Back-to-school time is upon us. While some families are looking toward openings around Labor Day, others are already scrambling to get necessary clothes and supplies and adopt new routines. Kids will be meeting their new teachers and making new friends. Older students might be starting various extracurricular activities and bonding with teammates, either athletic or musical.

My youngest daughter, Emily, is a first-grade teacher in Houston, and she’s already caught up in this busy time of year. So much preparation goes into setting up the classrooms and making sure students feel welcome in school, their second home for the next 10 months.

My oldest daughter, Abby, graduated from high school about 10 years ago. Today, she’s not caught up in any kind of busy schedule. Her world remains the same as it’s been for several years now because she has Sanfilippo syndrome, known sometimes as “childhood Alzheimer’s” because their effects are similar. Abby’s schedule is simple and predictable, since Sanfilippo has caused her to lose so many skills.

The dichotomy between the busyness outside our home and the regularity and predictability inside it is stark. This time of year usually makes me sad, as it’s a reminder of how the world keeps turning and everyone continues with their schedules, while my daughter is stuck. It’s exactly how I felt when my mother passed away. I was stuck inside, still with my grief, while the world outside never stopped at all. Anyone who’s lost a loved one can identify with this statement, I’m sure.

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Abby will turn 30 later this week. In another world, she could be married or dating, with a steady job that makes her happy. She might even be a mother with one or two kids by now, and doing a fantastic job of it. I imagine her being a little strict, but superfun at the same time. She would always have music playing for her kids, and they’d all have dance parties with their friends, or dance parties for the fun of it on a Tuesday night.

Abby would’ve made a wonderful wife and a dedicated partner to her husband. They’d be great friends, too. And Abby would have a core group of girlfriends who lifted her up when necessary. She’d cultivate those friendships and be there for her friends when they needed her.

Abby would also be an active member at our church, and she would’ve been such a good leader. She’d yearn to have a beautiful relationship with Jesus, and she’d know his unconditional love. She’d teach her children about him, too.

Advocacy must go on

Sanfilippo syndrome is a thief. It’s stolen Abby’s abilities and will continue to do so. It sucks and is so unfair. I don’t know how else to put it. I say that every day about her and all the other Sanfilippo kiddos I see online. Witnessing the toll this disease takes on Abby in real time, knowing that I can do nothing to stop it, is heart-wrenching.

We’ll continue to love Abby no matter what comes. Advocacy and awareness are so important in finding treatments and a cure for Sanfilippo syndrome. Our family will continue to do what we can to contribute to this cause.

Beyond caring for Abby, it’s all we can do.

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.