All About Oliver

Following Diagnosis Day…

Oliver’s Mom, Jen, writes…

Following diagnosis day, Brian and I met with the Geneticist. The doctor was so loving, and even she’d some tears with us. He said there were reasons to be hopeful. There were clinical trials underway for Sanfilippo Syndrome Type A and Type B that he believed would improve both lifespan and, most important, quality of life. Life. More hugs, more laughs, more meals together, more playing chase, more “Ugga Mugga” Eskimo kisses, more hand holding, more snuggles. He gave us great hope that Oliver’s story isn’t written yet. His words carried me, gave me strength, filled me with hope. There was significant medical progress for his Sanfilippo Type.

I also remember all the brave parents in my new community who reached out and offered their support. I remember one parent saying, “The beginning is SO HARD.” I needed to hear that. That it doesn’t get progressively harder but instead, you’re hit by a truck, and then hold on for dear life over the rocky terrain. I remember seeing a beautiful mother with a photo of her and her friends. She was smiling. It encouraged me that one day, I’d smile again. I remember a dad Michael Dobbyn adding a 💪 emoji to all of his posts, and I needed every one of them. There was strength and even lightness that I so desperately needed.

For that dad, when he got hit with the truck, he was told there were no clinical trials for his son’s Sanfilippo Type C. His son Connor is fighting for his life. As his dad says, “He’s just all love, it’s all he has in him.” Another Sanfilippo child running at the Speed of Love. And a parent running at the Speed of Love to save him. If you have it in your heart, please watch, please share his video:


All our love for continuing to be with us.

It’s a beautiful Fall day in the neighborhood!
The ONE and ONLY Aunt Jess reading to her nephew and niece…

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