Blog

Kirby’s High School Graduation

From a very early age, Kirby impressed us.  She’s always brought joy to the toughest situations and inspired us as she overcomes limitations.  This June, family and friends came together to watch Kirby reach an incredible goal:  cruise across the stage to accept her high school diploma. Once we started celebrating her achievement, Kirby’s long-time friends, Kathi and Rich (Nick...

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Defying Limitations

Everyday,  I take the train into downtown Chicago and walk nearly a mile to get into my Michigan Avenue office.  Although some days I have to dodge the unruly cab driver, here or elbow my way through Union Station, the city’s beauty never ceases to amaze me. However, what amazed me more was the passion Kirby’s special ed teacher showed toward her students.  I don’t know if I...

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A Cure is Within Our Reach

From the early days when we found only one researcher in the world working on a cure for Sanfilippo, to today when we face an exceptional opportunity, our mission to find a cure has never been more defined.  Please join us in our mission to find a cure for Kirby and other afflicted children.  We chose to fight this disease.  Let’s take our biggest step together.   Donate what you can,...

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Kirby’s 20th Birthday

This past week we celebrated Kirby’s 20th birthday.   As the day approached,  I couldn’t help but have some bittersweet feelings.   I thought back to the story my parents tell about Kirby’s diagnosis, when the doctor told my parents, well, enjoy her while you have her.  On that day, none of us knew what to expect or how long Kirby would be with us.  After that day, we...

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Faith In Remembering

Faith In Remembering

Over the past few months, I have compiled a huge collection of photos of Kirby.  I looked at the pictures of her in her younger years and saw a vivacious and energetic girl smiling back at me.  I remembered spending hours with her, treatment letting our imaginations run wild as we made fun for ourselves.  We had a connection that bridged the gap between sisters and friends, and...

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