How One New England Couple Makes a Difference With Potato Chips

All Things New England is back again with their Friday guest post. See how one couple takes advantage of the snack-food industry to help raise money to cure microcephaly. Oh, and Happy New Year’s Eve!

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.  However, sadly, 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 by disease, their families and caretakers whose lives are affected on a daily basis by disease and illness. It takes a lot of courage and strength to just 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 which is 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. Rick laments, “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 comments. “We have come to terms with those facts and appreciate every moment with her. ”

Read the rest of this post over at All Things New England here


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