Robin Johnson of Sonoma has made a promise to her 3 year old son, Jack – to never stop fighting on his behalf to find a cure for Cystic Fibrosis.
According to Robin, Jack has no idea that most preschoolers don’t spend over an hour a day “doing breathing treatments and shaking in medical vests to loosen mucus in their lungs.” In one week’s time, Jack must take 91 pills a day. The doctor’s office has become a very familiar place to visit. And, if he’s lucky, Jack may live to see his 37th birthday.
But for any parent, this isn’t good enough.
Robin and her husband, Jared, are both carriers for CF, which gave them a 25% chance of passing on the genetic disease. At 14 weeks pregnant, an amniocentesis proved the worst was true, that their son had cystic fibrosis. Thus far, Jack has been a healthy child. But because cystic fibrosis is a progressive lung disease, the chances are great for his condition to dramatically worsen if a cure is not found.
“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States” and “70,000 worldwide,” Robin explained. “A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that”, according to www.cff.org: “clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.”
Robin Johnson is spreading the word about cystic fibrosis, raising funds and awareness about the life shortening disease by signing up for Great Strides, a 3-mile walk with the CF Foundation, serving as their premier fundraising event in efforts to cure cystic fibrosis. The walk is on April 13th at Spring Lake Park in Santa Rosa, beginning at 10 am. Thus far, Robin has managed to raise $610 towards her goal of $3000.
Robin shared a video of her son, a visual tale of a happy child who just so happens to also suffer from cystic fibrosis. Watch it here: www.facebook.com/photo.php?v=605284129498253
To help Robin keep her promise to her son, like her page on Facebook – www.facebook.com/LetsFindACureForJack. You can also visit her fundraising page if you would like to donate to Robin’s cause, or www.cff.org/great_strides if you would like to take part in the Great Strides walk.
