Among My Greatest Fears Is When Sanfilippo Children Lose a Parent

Fear is often present in life with Sanfilippo, but it can change over time

Valerie Tharp Byers avatar

by Valerie Tharp Byers |

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October is my favorite month. I grew up in Ohio and loved the snap in the weather when fall finally arrived. Besides being my birthday month, it also brought Halloween. I always looked forward to spooky stories and the thrill of being “scared” at local haunted attractions or while watching movies.

I didn’t understand then the true meaning of being scared. I do now. And my fear isn’t based in what you’d expect.

A mother of a Sanfilippo child died this month in a tragic accident.

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Maggie and I weren’t close. We were both Texas mothers of Sanfilippo children, but our towns were hours apart, and between therapy, work, school, and medical schedules, there wasn’t a lot of free time to arrange a meeting. Instead, we felt the connection of community that many living with rare conditions experience; it’s something that transcends traditional friendship.

We’d talked a few times, on the phone and online, and we followed each other on social media. In fact, the weekend of her accident, I noticed a picture from a wedding that she’d posted. Turned out the picture was taken just hours before her accident. Although we weren’t close friends, reading the announcement of her loss hit me hard. It hit the community hard.

The loss of Maggie represented to me what I think is every Sanfilippo parent’s worst fear.

When your child is diagnosed with Sanfilippo syndrome, the word that hits hardest is “terminal.” Initially, the thought of your child dying is the scariest part of the disease. It claws at your heart as you fear living in a world without your child in it.

But as you live with Sanfilippo syndrome, as you take care of your child and see the reality of cell waste building up in your child’s body and the toll that it takes, your fear changes.

The scariest thing isn’t living in a world without your child; it’s the fear of what will happen to your child if they live in a world without you.

The needs of our 12-year-old son, Will, are extensive. Just last month, I wrote about the difference between the expected and unexpected hardships that come with living with Sanfilippo syndrome. I’ve also discussed how caregiving for my son is like a full-time job, and how difficult it is to get actual help or respite, as well as the physical toll this life can take on you.

Through all of Will’s journey, my husband and I are constant anchors of his care. We’re not only his loving parents, we’re also his advocates and live-in caregivers. We know him and his care requirements better than anyone.

If something happens to us, what happens to him?

Of course, we have plans in place. We have wills and trusts and guardians and everything that we can possibly think of to make sure he’s cared for appropriately. But no plan is foolproof. Even now, as Maggie’s family members work through their grief, they have to focus on fundraising to even attempt to cover the loss in care that her daughter will now experience. A s the family states, “Her life was dedicated to her beloved kiddo. Truly, Maggie did the work of five people and she is literally irreplaceable. Her family now needs to find a way to fund the services, care and support that Maggie provided [her daughter] 24/7.”

Our children are our everything, but we’re also everything to our children. As frightening as it is to contemplate a world without Will in it, it frightens me more to think of us not being here for our son.

I don’t have all the answers, or any of them, really. My heart is filled with grief for Maggie, for her daughter, and for our community, as we mourn this loss and contemplate our own worst fears.

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.


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