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, 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 could name...
read moreFrom 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, whether it...
read moreThis 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 were all scared as to...
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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, letting our imaginations run wild as we made fun for ourselves. We had a connection that bridged the gap between sisters and friends, and our support for each...
read moreThis has been one of the busiest holidays for me – leaving a job, starting a new one, moving to a new apartment, leaving my family and friends, and throw a wedding, Christmas and New Years in there. However, amidst all of the craziness of the holidays, Kirby came through again to show me what they are all about. They say Kirby is a “special needs” child, which makes one think...
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