Cystic Fibrosis, an inherited chronic disease that affects the lungs and digestive system, affects 30,000 adults and children in the United States and 70,000 worldwide. It is caused by a defective gene and its protein product that produces a thick, sticky mucous that clogs the lungs resulting in life-threatening lung infections, impedes the pancreas from working correctly, and stops enzymes in the body from breaking down and absorbing the nutrients in food.
Eight years ago I met a bright, outgoing, laugh-your-ass off funny, little kid who was in the fifth-grade at my kids elementary school.
He just happened to be the big brother of my son’s new best friend.
He was handsome, full of life, almost always smiling, and just one of those all around good kid who teachers, parents, and kids alike, just fall in love with the moment they meet him. Unless you are friendly enough with the family to stop by their house unannounced and find Josh in the middle of one of his many treatments, the kitchen counters covered with equipment, or you are one of many to receive the Pyser’s annual May family letter, you would never know, that this vibrant child was diagnosed with CF at the age of three.
That little boy is now eighteen and getting ready to begin a new chapter of his life in college. It’s hard to believe that the same little kid who protected his little brother and his kindergarten friends from the big bad bus bullies in fifth grade, is old (and strong and healthy) enough to be reaching this pivotal milestone.
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You’re on your own. And you know what you know. And YOU are the one who’ll decide where to go…”
― Dr. Seuss, Oh, the Places You’ll Go!
My daughter reminded me of that fact today when she read this on the Cystic Fibrosis Foundation’s website yesterday:
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Josh, has always held a special place in my family’s heart, and always will. My daughter, she’ll kill me if she reads this, developed her first little girl crush on him while camping in Lake George years ago. Her twin brother, who is like one of the family, raised over $1000 for Josh and CFF in third grade as part of a school project for which he had our family design greeting cards, and he sold them to family and friends with all profits benefitting the cause.
Each year, when sports don’t prevent us from doing so, our family walks with Josh and his family in the annual Berkshire County Great Strides walk in May, thus the impetus for the annual Pyser family letter. This year’s walk is set for May 20. My son Shea is probably one of the strongest advocates in our family for getting out there and walking as a family to help Josh.
The Pysers, though our lives are not as intertwined as they used to be due to our kids pursuing different interests, are family to us. That fact was reinforced by the great big hug and the “I’ve missed you,” Shea gave Josh’s mother, and my very good friend, Michelle, the other day.
Yesterday I received my letter via e-mail, accompanied by the video below. My kids look forward to watching Josh’s video each year because it reminds them of how much their friend is thriving, and how precious that fact is.
With permission from the family, I have copied the letter below. Won’t you please help our friends and donate to the cause to ensure that Josh will get the same chance to live a long and healthy life as the rest of us?
Dear Family and Friends,
Every year at this time you receive a letter from us asking for your support. Our son Joshua, 18, has CF. As of today there is no cure, but we have exciting news. Kalydeco™ a new oral medication was approved by the FDA on January 31, 2012 for people with CF ages 6 and older with the G551D mutation. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR. Unfortunately this drug does not address Josh’s mutation, but is a stepping stone towards a cure for all those who suffer from CF.
This is why we must continue to ask for your help. We will not stop fighting until there is a cure for this devastating disease. The Cystic Fibrosis Foundation is a smart charity. It has been recognized by Money magazine as one of the top 10 health charities. Ninety cents of every dollar raised goes directly to research and development.
The Cystic Fibrosis Foundation has partnered with many top drug companies and they currently have more than 10 drugs in the pipeline. These drugs address symptoms, infections and gene therapy. Please help bring these drugs and treatments to fruition. Your past support has helped co-author the success of the new treatments we have gotten in the last ten years.
Watch our video of Josh and his battle against Cystic Fibrosis http://youtu.be/yqtyAlEBaa0 .
Josh and other children like him depend on you to help them obtain a quality and long life. On May 20, 2012 we will be walking in Great Strides, please make a donation by sending me a check made payable to the Cystic Fibrosis Foundation. Or you can go on line at http://www.cff.org/Great_Strides/MichellePyser.
Your continued support is greatly appreciated. Please feel free to forward this email to your friends, family and facebook friends.
Neil and Michelle Pyser