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The Glimpse I Didn’t Want Into My Son’s Future With His Disease

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When our son, Gil, was diagnosed with Hurler syndrome (MPS-I) in 2005, we entered a whirlwind eerily familiar to all families with kids facing serious medical challenges. We received Gil’s diagnosis on a Wednesday, and the following Monday we found ourselves halfway across the country and in a whole new world. We were referred to the University of Minnesota Masonic Children’s Hospital because they are a leading research and treatment facility for MPS-I. Upon our arrival, we began learning facts, figures and more multi-syllable medical terms than we could possibly comprehend.

In short, we were drinking from a fire hose. It was overwhelming.

The question on every parent’s mind is impossible to answer: How will this condition impact my child specifically? Our doctors were wonderful, but they were also brutally honest. They had been down this road with many other families and knew there was no point in being anything but frank. In a world of so much uncertainty, there was actually a refreshing quality in their honesty. 

That week was full of tests, assessments, procedures and hard truths. We went through a crash course in what life might be like for Gil. To be honest, we were weary, heart-sick and scared.

We stayed at the Ronald McDonald House, and one of the staff members eagerly mentioned a little girl with MPS-I had been a resident through her bone marrow transplant. She still visited the House regularly to play. Her family had moved to the Twin Cities to be closer to her treatments, and she loved the playrooms and the playground. The woman asked if we’d like to be introduced.

Out of courtesy, we paid lip-service to being interested, but in truth it was the last thing we wanted. We’d already learned too much on that trip. It was enough harsh reality for one week, and adding such a personal glimpse into Gil’s possible future seemed like too much. I think we were simply afraid of what we would see. How debilitated would this little girl be? What kind of horrifying preview would she provide into a life we were still trying to comprehend? We were keen to enjoy our blissful ignorance just a little longer. Still, we were told when Janie* would be at the house and said we’d try to be there as well.

The day of her visit, we had an early morning appointment. Then we headed out to the Mall of America. As we headed back to town after prowling the mall, my cell phone rang. It was the Ronald McDonald House, wondering if we’d be back in time to meet Janie. We explained we were still out and might not make it back in time. As I hung up, we felt guilty, but not guilty enough to speed back.

By the time we returned, the coast appeared to be clear. The house was still and quiet. As we walked through the house toward our room, Gil, tired by our adventure at the mall, began to cry. Around the corner, seemingly out of nowhere, bounded a beautiful little girl with flowing curly hair and a beaming face. She made a beeline for Gil and began cooing, “Don’t cry, baby. Don’t cry,” sweetly stroking his shoulder and comforting him.

A lady accompanying her approached us. As we chatted, I mentioned how struck I was by how Gil seemed to calm under this charming little girl’s attention. She seemed like such a natural, I suspected she was the older sibling of someone with medical concerns. At that moment, the Ronald McDonald House staff member came out with a huge smile on her face and said, “Oh great! You got to meet Janie after all!”

It immediately dawned on me that this beautiful, bright, articulate, caring and nimble little girl was the very glimpse into Gil’s future we had tried to avoid. My jaw went slack, my throat knotted up and my eyes misted over. If this child was what Hurler syndrome could be like, we could do this! I was humbled, ashamed, emboldened and grateful in the same moment. I realized then I must never again shy away from an opportunity to learn something about Hurler syndrome. Any information, experience or understanding I could acquire, I owed it to Gil to stand up and face it. I will always be so grateful to Janie for not just knocking down a wall, but for disintegrating it forever.

There is certainly a broad spectrum of presentation in Hurler syndrome, like most of the conditions faced by all our kids. But we must never allow ourselves to simply assume the worst. The challenges we all continually face are real enough, and they will present themselves in their own time. But when I look at Gil now, some nine years later, I realize he is an amazing little boy who continues to surprise and delight me every day. He’s nothing like I expected him to be, but he’s so much more than I could have dreamed. Well, more than I could have dreamed before we got a dose of what we needed instead of what we wanted. In that role, Janie was just what the doctor ordered.


*Name has been changed.

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Originally published: June 8, 2015
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