Thinking about my daughter’s future includes planning her funeral

As morbid as it sounds, I sometimes find myself thinking about my daughter’s death and funeral.

In 2022, Liv was diagnosed with Sanfilippo syndrome, a terminal, neurodegenerative, genetic disorder. Today, she is 6 and doing well, all things considered, but this diagnosis has felt like nothing short of a death sentence. Since Sanfilippo type B has an average life expectancy in the mid to late teens, odds are Liv has between six and 14 more years with us.

Liv smiles at her grandparents’ house. (Photo by Erin Stoop)

So why do I find myself thinking about her death? I don’t know. It sneaks up on me at different times. Sometimes it’s when I’m lying in bed with her at night. As she peacefully falls asleep on my shoulder, I find myself wondering how much longer I’ll get to do this with her. How will she pass away? Will she be sick in the hospital, or will she simply fall asleep next to me and not wake up the next day? Will my husband and son be home? It’s the ugliest, most awful rabbit hole I could ever crawl into.

I not only think about her passing, but about her funeral, too. Sometimes it’s when another Sanfilippo child passes, and I find myself bawling through their obituary. How old was the child? What type of Sanfilippo did they have? Were they in a clinical trial? Then, “What will I write in Liv’s obituary?” goes through my head. Where will we have her funeral? I know so many people will want to be there.

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With a future that is so out of my control, thinking about her passing and funeral may be my brain’s way of planning ahead. While most parents are planning their kids’ sports adventures, elaborate vacations, graduation parties, and college campus tours, I am planning therapy sessions, medical appointments, and equipment repairs. And while most parents help plan their child’s wedding, I will be planning her funeral.

Liv and Erin Stoop attend a local baseball game. (Photo by Erin Stoop)

It sucks, but I’ve come to accept that it’s our reality. I have always been a realist. I know this disease will take Liv’s life. Miracles exist, yes, but no child has ever been cured of Sanfilippo syndrome. It is relentless and will be the reason Liv leaves the Earth.

I am not yet ready to think about specific details regarding her funeral; those things can wait. But I know that right now I can continue to guide her life in a way that will result in an obituary I am proud to write — one full of love, laughter, empathy, and a genuine appreciation for the small, memorable moments we’ve created.

I will love her hard, give her experiences, and share her with the world. Her life will not be measured in years, but in lives impacted. Liv has already touched so many hearts; I will be proud to share all of her accomplishments with the world one day.

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.