A white screen stares back at me as I struggle to find the words for this next story. It's long overdue and I'm stuck, overwhelmed by my own emotion. I remember Kelly, a little girl I used to babysit for. She had the sweetest giggle and was the Queen of Silly. If I let myself, I can still see her, rolling around on the floor with her legs up in the air, laughing uncontrollably. We spent many afternoons together reading stories, eating popcorn and just making each other laugh. I was very close to her and her family. We were a big part of each others' lives. Sadly, however, Kelly was plagued with numerous and very serious medical problems. We lost Kelly when she was only 10. I was a teen in turmoil trying to make sense of a world that, to me, was already off kilter. Seeing Kelly's bright smile in a portrait placed atop her little casket forever changed my life. I learned that life isn't fair and that some very terrible things can happen to some very good people. I learned that sickness and death have no mercy, not even for children. Words like this seem unproductive, but in my world, it's the harsh reality of an unfair truth. That having been said, I have a tremendous amount of respect and admiration for people afflicted with disease, as well as their families and caretakers whose lives are affected on a daily basis by disease and illness. It takes a lot of courage and strength just to keep on keeping on...to find joy and happiness in life's little wonders and in the smallest of accomplishments. Perhaps this is why I was drawn to Rick Jewell and his daughter, Rylee.
Rick Jewell is a food broker from Longmeadow, Massachusetts. He is the father of two beautiful children, Ryan, 6 and Rylee, 4. He and his wife, Jennifer, have been married for over 8 years and together they are conquering life's challenges with purpose, dedication, love and commitment. Their youngest child, Rylee, was born with microcephaly, a neurological disorder that causes the brain to stop developing properly. As a result, the head and brain grow smaller than average. There is no cure for microcephaly and the symptoms and severity of this condition vary from case to case, making it hard for doctors to treat and even harder for researchers to understand. Microcephaly affects nearly 2.5% of the entire population with 25,000 cases in the United States each year. "Unfortunately, and what people do not realize is that Rylee is not going to experience life normally like many of us. Can you image every day struggling to use a feeding tube, breathe, and stay healthy. Or not be able to walk, talk, go to high school/college, have a job..." Rick laments. "We have come to terms with those facts and appreciate every moment with her."
Rick and Jennifer are working to make a difference for other children like Rylee and their families by raising money and awareness about microcephaly in hopes that scientists might one day find a cure. They're doing so by selling potato chips. And not just any potato chips-these are Rylee's potato chips. Rick took his 20 years of experience in the snack food industry and partnered with Dan Dinner & J&D Foods of East Granby, Connecticut in June of 2010 to market a new brand of kettle-cooked potato chips for which a portion of the proceeds is donated to the Foundation for Children with Microcephaly. Currently they are selling snack-sized bags of chips throughout New England at local gourmet and deli shops and, most recently, Big Y foods. "Every time we sell a bag of chips, we donate a portion of the proceeds to the Foundation for Children with Microcephaly. The FCM in turn uses those funds for genetic research, along with a program called Wishing on a Star, a program that supplies necessities to enhance the quality of life for children associated with microcephaly," Rick says proudly. " In the short time since the launch of the company, I literally receive calls and emails daily supporting our effort and descriptions on how they were affected by certain special needs within their family or friends network. Tears are usually a normal part of the day."
Rylee's Potato Chips range from $.99 to $1.29 per bag and already they have raised a substantial amount of money for the Foundation for Children with Microcephaly. Rick will be launching a new chapter of the foundation, the Foundation for Children with Microcephaly New England, money raised from which will provide essentials for children in New England. Bigger-sized potato chip bags are also on the way along with some new products yet to be revealed.
I'd like to thank Rick Jewell and his family for sharing their story with us and I encourage others to join in supporting Rylee's cause. Rick states it perfectly when he says, "This company was formed to help raise awareness for Microcephaly and honor Rylee and her struggle. So, if I can introduce her to the world through this effort, make people aware of what a special child she is and maybe even make the Princess a rock star, I would be happy."
Written By : Jessica Layne
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