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What We’ve Learned From 2080 Days With Sanfilippo Syndrome


Dear Sanfilippo syndrome,

I’m taking the time to write this letter to you because, frankly, it’s time I let you know how I really feel.

It’s been five years, eight months and 11 days since we found out about you. That’s 2080 days we’ve known your name. I’ve been quite content not to address you, but now it’s my turn to face you.

I’d like to know how it feels now that you’ve stolen many of our dreams. How does it feel to know you’ve slowly, over time, robbed our daughter of every chance at a normal childhood?

How does it feel to know you’re a murderer?

Are you proud of the many tears you’ve caused us to shed?

Is your plan to darken all of our days?

Do you laugh at the thought of the fear you bring?

Do you exist just to defeat us?

When we were first told about you, I had my answers. It was clearly stated in that trifold brochure we were handed just how ugly you were going to be. That your life-altering presence would tiptoe into our daughter’s body and ever so slowly start to show your ugly face.

In these 2080 days, you’ve taken her voice — the sweet voice that once said, “I love you,” to her mom and dad. The voice that was able to call her baby sister by name. “Ninley,” she called her sister, Finley. The voice that loved to sing, “Jesus loves me,” and “Happy Birthday.”

In 2080 days, your presence in her body has caused her to seize, to have a feeding tube, and you’re slowly taking her ability to walk and run as well. I had dreams for our Livia Grace. I dreamed of one day watching her walk down the aisle in my wedding gown. Now, because of you, I have to think about cutting the threads of my beloved gown to make her funeral dress.

I have every reason to hate you. To scream how horrible and unfair you are. How I wish I never knew you. It would be so easy for you to consume every ounce of every minute of every last breath I have.

I’m sure your plan was to defeat us. I could use everything I had to curse your name, to spend the rest of my life bitter, angry and consumed with the thought of you.

But I won’t.

I don’t have time for you. That evil, ugly plan laid out before us in that trifold — we aren’t allowing it to prevail over our family.

You see, your plan has backfired. Your presence, although unwelcome, has changed everything. You’ve changed our hearts, our eyes, our priorities and most of all our village of support. Not only do we love more fiercely and appreciate more greatly, but we know the importance of taking care of one another. You’ve brought people into our life who have decided to walk alongside us through this journey. A community of people who are inspired by an 8-year-old girl. A child who has brought even the strongest men to drop to their knees and embrace her.

Sanfilippo syndrome, unfortunately, you will always be a part of our world. You will be included in our vocabulary, but you will not be included in how we love, how we LIV, and how we cherish every day. You see, good really does prevail over evil. Every part of you is evil, but every part of our daughter’s life is good.

Her inability to verbally speak into our hearts doesn’t trump the way her eyes look into our souls. Her complete dependence on us as her parents to keep her fed, clean and safe has given us a new appreciation on how lucky we are to simply wash our own hands. The ugliness you bring in the night when she fights to sleep only deepens our gratitude to wake with the opportunity of a new day. The smiles and laughter you’re stealing make us celebrate as if we’ve won the lottery when a smile or laugh shows up.

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Sanfilippo, you are life-stealing, but you’ve also given us a new life. One in which we will never give up the hope that a miracle will save our baby girl but one in which we LIV for the promise of heaven.

A version of this post originally appeared on Hubert Honeys.

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