November 4, 2010

Adam's courage inspires and brings the community together

I can't help but share these amazing stories from other NPC families...enjoy.

Ever courageous Adam Recke
Adam ReckeAdam Recke is a very brave and special 9 year old boy. Having been diagnosed with a very rare terminal disease called Niemann-Pick Type C (NP-C), he is approximately only one of 500 cases worldwide. Despite this he tries to live as normal a life as possible and plays video games, sports, adores his Philadelphia teams and loves his family very much. Thanks to the support of his family and community he starts every day smiling, has parents that look at him adoringly, and hope they can make every day of Adam’s life precious.

According to the website, in order to help Adam and others like him, “Adam’s parents, friends, co-workers and community bonded together to form The Race for Adam Foundation, a non-profit organization designed to bolster funding for research and awareness for this very rare disease. The Race for Adam 5K takes place each year in early summer; the Golf for a Cure takes place every year in the fall; The Ride for Adam takes place every summer; and the Corvettes for Adam takes place every fall. These events, plus many more, make Adam proud and he would love to see all of you take part in these events because all he really wants is for everyone in his life to enjoy the lives they have, and he also wants everyone to have a good time to show you his real smile.

The Race for Adam Foundation, a volunteer non-profit organization dedicated to funding research projects to find a treatment and cure for Niemann-Pick Type C disease (NP-C) and related neurodegenerative disorders, began in 2005. In July of that year, Sean and Amy Recke’s seven-year old son, Adam, was diagnosed with NP-C, a genetic neurodegenerative disorder for which there is no cure. Due to the family’s kindness and respect for everyone, the community came together to help them. They are a family who has shown great patience, strength and hope in this time of urgency. Adam has touched the lives of everyone he has met, and continues to embrace life with a perfect smile. With the support of the community, a seed of hope has grown and continues to branch through events that will promote awareness and funding for research into NP-C and related neuro-degenerative disorders. The Foundation is named in honor of Adam Recke.”

We spoke to a family friend Sheri Curtin about how she knows Adam, her work for his organization, and how his amazing story has inspired her family and community at large.

Sheri says, “We met Adam and his amazing family about 6 years ago when we relocated to Bethlehem, Pennsylvania. He was playing baseball where our youngest son started school and we heard about him from conversations at the field. We were eventually introduced to Adam and his family and discussed with them what they were going through, and asked how we could help. Sean, Adam’s father, gave me the contact information for the events that they have to raise money for research, and to help pay for the extreme medical bills they face every month. From there I became one of the committee members for the Annual Poker Run and Family Picnic for Adam. It is now a family affair for us every year. My husband cooks all day at the picnic, and my children and their friends help to serve food and set up, as well as take down the facilities after the event. Our youngest son Colin even helps as a runner with ice water for the volunteers and security people during the event. We have about 1500 to 2000 people that come to this particular event every year. It usually begins with a speech from Casey Stengl the Founder, followed by the singing of our National Anthem to a 60 mile motorcycle ride with Adam in the lead. This year we were able to get a motorcycle with sidecar for him to ride in. During previous years he rode in a convertible with his family. It culminates with a huge picnic featuring music from bands and a children’s play area, exhibitions from local stunt bike riders and skateboards. We sell t-shirts, wrist bands and annual patches to commemorate the event. People who have come once usually attend every year after that, and look forward to the event. We spend several months in advance of the event in August getting donations to make this event happen and put together baskets to raffle. It is a lot of work but if the end result is that Adam lives another day or week or month longer it is worth it, as that is more time to help find hope he will be here another year to celebrate. This event started as a small company picnic with about 40 people passing a bucket around for donations 5 years ago and has grown to what it is today. This little boy has managed to capture the heart of some unlikely heroes and has captured the essence of “it takes a village to raise a child”, because it is a community that has come together for the sake of Adam and in doing so the sake of the small group of children in the world that have NP-Type C. Every advance for Adam in looking at finding a cure will benefit every child that has this diagnosis.

One of the most important things to know about Adam and his family is that they always let Adam be a child. It is an important thing and very hard when you are faced with the constant medical appointments and treatments and emergencies that pop up with a critically ill child, and then the overwhelming medical bills, this is enough to break families up, but I see it bring the Recke’s closer together. In essence you end up living the disease’s life and not your own when dealing with something like this. This is also something I have a lot of empathy for after dealing with my oldest child having a stage IV cancer when he was 5 (which was 25 years ago). The dynamics of life change, commitments and other people in a family get lost in the disease you are dealing with. With Adam’s family things are so inspiring. Adam's parents treat all of the children in their family equally and they let Adam do all the things any boy his age would be doing. In some respects this is probably beneficially for Adam’s health as well, as it continually reminds his body how to move and what to do. Another part of this terrible disease is that Adam’s body is failing. His muscles forget how to keep him standing or walking. His motor function has deteriorated a lot since we first met him, his hearing is failing and his speech has become more difficult to understand and it's sometimes even harder for Adam to formulate words. Regardless of all of that, he has not forgotten how to smile and laugh, and one day with Adam watching him smile and laugh is always an amazing day. I am truly blessed to have met Adam and his family and to participate in his life as is all of my family. We are also blessed with being able to work alongside some of the most truly loving and caring people that call the Recke family their friends.

This past season in baseball, for the first time since being diagnosed, Adam hit a baseball during a game. It wasn’t a home run or a grand slam, it was simply a hit and something he has not been able to accomplish because of the decline in his motor function and the eye-hand coordination it takes to do this, something another child would take for granted, all from this devastating disease. The umpire of the game that day happened to be the Little League President and he was in tears to know he was there to see something so awesome for Adam. After the game the umpire was so excited he kept telling everyone that all he wanted to be able to do was start cheering for Adam as he ran to first base but he could not because of his responsibility as umpire during the game. I am not certain I would have had the same restraint as this man, had it been me in his place.

We also know that there is a food product out there that they believe they are trying to get FDA approval for, as a drug for use in children with NP-Type C. It is currently being used in animal models with some encouraging results. “

Please contact Sheri Curtin at or visit their website at if you are interested in donating goods, money, services or time for the event next year, as we are always looking for help!

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