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Miles for Miracles - Sarah's Story

Updated: Feb 24, 2022

My wife Kate and I were lucky enough to welcome our first child, Sarah into the world on Sept. 24th, 2002. She was my first born daughter. My goal was always to raise kids with my college sweetheart, and we were on our way, settling in to bring our baby home to our new dream house purchased just a year earlier. Around her 1st birthday we noticed her growth was not progressing like her peers. After many tests and agonizing months we were given the news no parent wants to hear. She has a rare syndrome knows as Shwachman-Diamond Syndrome with no known cure and a life expectancy of under 20 years. This crushed us as she was outwardly healthy and happy. The biggest problem with her syndrome was almost zero immune system. Normal colds that we would get rid of in a week would send her to the hospital as her white blood cell count could not fight off even the smallest infection. Since I had the flexibility to work from home I spent so much time with her, we were best friends. Unfortunately, much of our time as she got older was at Boston Children’s Hospital to fight her disease. Fast forward to August of 2016 we were on the beach as a family and our specialist called and explained Sarah’s test had gotten progressively worse and it was time for the dreaded Bone-Marrow transplant. With no perfect match in our family we took a chance on a match and admitted her in October. The next three months were filled with so many emotions on so little sleep. Hope turned into despair as the bone marrow didn’t take and she quickly went downhill. The side effects were awful and by the end I didn’t recognize my beautiful girl. On December 15, 2016, our sweet daughter Sarah was taken from me, my wife Kate, her sister Leah and many more family and friends after a lifelong battle against Shwachman-Diamond Syndrome. I miss her hugs every day, and the world is worse off without her smile.

Sarah was the sweetest girl you could ever hope to meet. She loved the beach and swimming. She had a quick wit, amazing sense of humor, and an angelic singing voice. She was also incredibly strong; I never heard her once complain about her medical issues. As a family, we spent years making the trip to Boston Children’s Hospital to see many doctors, and eventually Sarah had to be admitted for a bone marrow transplant. During this time, my family experienced firsthand the amazing care and compassion Boston Children’s provides children and their families.

I was very angry and depressed for many years after her death. It changed me, I shut off my friends and family just existing and trying to get through the days for my other daughter and wife. There were bills to pay and after spending so much time with Sarah, my Leah really needed me. Counseling helped a little but I still raged inside. One day a video memory popped up on my phone, not sure how. It showed Sarah running across my mom’s lawn laughing and smiling. She was a natural runner, so light and bouncy in her stride (contact sports were not allowed due to her medical condition). I decided I wanted to run for her right then and there. I was badly out of shape and started slowly, but the stress release and calming effect was almost instantaneous. I found I liked the solitude as I could “shut out the noise”. I also felt her with me on my runs, as I cover the same paths we used to walk together. Pain of long runs was almost welcomed because I thought I deserved to hurt. I know she would not want this for me, that I should try to be happy in life. I can almost hear her voice telling me “c’mon old man, just

smile I’m ok”.

I am humbled to run the Boston Marathon in Sarah’s memory to support Boston Children’s Hospital, so that I can help raise money and awareness to end childhood cancers. I have joined the Miles for Miracles team to support Boston Children's Hospital because of the world-class care Children’s offers to kids and their families. Boston Children’s Hospital provides:

● Patient care programs that are sensitive to what sick and injured children and their families really need.

● Funding for researchers who regularly make amazing discoveries that change children's lives.

● Care to kids whose families cannot afford health care--more than any other hospital in Massachusetts.

● Community programs that provide care to low-income and at-risk kids.

Boston Children’s care does not end there. Boston Children's really understands the importance of training the next generation of top pediatricians and nurses, so they can continue to carry the torch to provide the best, most innovative care to children and their families.

I am not a long-distance runner, but I will finish this race because I’m running for Sarah. If you can, please make a gift in Sarah’s memory to support Boston Children’s Hospital.

With gratitude,

Dan Kilby

Link to donate:



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