Accepting my daughter’s Sanfilippo diagnosis has allowed me to heal

I am now at peace with my daughter Liv’s terminal, neurodegenerative, genetic disorder. Over four years ago, at age 2, she was diagnosed with Sanfilippo syndrome. Liv was still gaining skills at the time, but we were told that soon, it would shift, and she would start regressing and experiencing seizures, and would likely pass away in her teens.

For a year after her diagnosis, I lived in a state of shock, anger, and fear. I was sad for her and for our family, and I just wanted to wake up from the worst nightmare of my life.

Erin Stoop holds her daughter, Liv, shortly after Liv’s diagnosis in 2022. (Photo by Traci Stoop)

I was desperate to save Liv’s life. Our family went into fight mode, fundraising, advocating, and educating. We hoped to enroll Liv in a clinical trial — anything to slow the disease’s progression.

It’s been four years, and we’ve had no clinical trial opportunities. Liv has regressed considerably, lost all her speech, and is losing her mobility, but thankfully, she seems to be blissfully unaware of this.

As time has gone by, I’ve adapted, and my mentality and outlook have shifted. While I’d give anything to rid Liv of this diagnosis, the reality is that, at this point, a cure isn’t possible for her. This acceptance definitely didn’t happen overnight; rather, as I’ve said a gradual goodbye to the healthy child I had envisioned her to be, acceptance of who she is has set in.

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That frame of mind has allowed me to sleep comfortably at night. To outsiders, this may seem like I’ve “given up” on saving Liv. But at my core, I am a realist. A child has yet to be “cured” of Sanfilippo syndrome. All the prayers and well wishes won’t bring about a miracle for my daughter. I realize this may sound extremely sad and negative, but by accepting reality, I no longer fear her future. I know the upcoming years look sad, but I feel I can appreciate where she is right now, because I know what’s to come.

From left, Liv, Erin, Tyler, and Liam Stoop pose for a family photo. (Courtesy of Erin Stoop)

If a clinical trial or medication opportunity arises, I will wholeheartedly consider the pros and cons of the treatment and make a decision based on what is best for Liv at that time. But in this moment, I will savor her. I will embrace her and love her. I will not pursue extensive therapies or travel across the world for an experimental treatment. We will cuddle comfortably in our own home each night, aside from an occasional vacation to see family.

In the TV show “The Office,” Andy Bernard says, “I wish there was a way to know you’re in the good old days before you actually left them.” I think of that quote often and attempt to be grateful for where our family is right now.

Liv is 6, and our son, Liam, is 4. They both love school and each other, are happy the majority of the time, and our daily routine is a well-oiled machine. While Liv has lost her speech and struggles with mobility, she’s sleeping and eating well, hasn’t had any seizures, and has stayed relatively healthy recently. I don’t take any of that for granted, as I know things could change overnight.

Because I know where Liv’s diagnosis will take her in the coming years, I recognize we’re currently in the good old days. I’m grateful to realize that now, before we’ve actually left them.

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.