My Great Strides Story
When our daughter's first child, Calleigh, was born, the lovely Robin and I were ecstatic--as we had been for the arrivals of our son's two children. But Calleigh's first weeks and doctor visits concerned us all. She was a beautiful baby but wasn't gaining weight or strength. She couldn't get enough to eat and what she did eat seemed to go right through her. The doctor explained that she might have cystic fibrosis. That sounded unlikely to us; CF is a genetic disease, and neither side of Calleigh's family had seen any indication of CF running in the family.
We had to wait for several weeks, praying and hoping for a "better" explanation. One of the ways to test for CF is a "sweat test," but infants don't perspire until they are at least a month old. The tests confirmed the doctor's suspicions. Calleigh was born with cystic fibrosis, a genetic disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body, resulting in life-threatening lung infections and serious digestion problems. The condition also prevents the pancreas from producing the enzymes necessary to digest fats and proteins. Calleigh's condition would require her to receive synthetic enzymes with every meal or snack and do breathing and vest treatments several times a day to keep her lungs working properly. Her parents and other caregivers would have to stay vigilant against infections and other complications.
Less than two years later, our family prepared to welcome Calleigh's little brother Ryder into the world. Our daughter and son-in-law ordered an expensive pre-natal test to learn whether he too had CF; he did (since we knew that each of Calleigh's parents were carriers, we knew that there was a 25% chance the next child would have CF, 50% he would be a carrier but not have CF, and a 25% chance of neither). The pre-natal test, however, helped our family to prepare so that his birth and early months could be free of the grief and trauma that characterized Calleigh's early infancy. Everything the family learned in caring for Calleigh informed our care for Ryder, and he and his sister could not have better caregivers than their parents and extended family.
In late 2016, Calleigh became eligible for a new treatment that donations to the CF Foundation have helped make possible; it is called Orkambi, and we hope that it will halt any further deterioration of her precious lungs. We also hope Ryder will soon benefit from it and current research since he turned six in late 2017. And, while we pray for a miracle, CF researchers have also told us that a one-time cure is more than likely within their lifetimes.
That is why I and my family participate in Great Strides every year: to increase Calleigh's and Ryder's prospects for long and healthy lives. Great Strides is the Cystic Fibrosis Foundation's largest and most successful national fundraising event. Our team (“McCane’s Miracles,” named for Calleigh and Ryder) raised more than $11,000 in 2016 and we hope to do even better for the 2018 walk, to be held on Saturday, May 5, in Oxford, Ohio.
PLEASE help me meet my fundraising goal of $5,000.00 by sponsoring me. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care, and education.
Making a donation is easy and secure! Just click the "Donate to Me" link above. Or join my team and become a walker yourself by clicking "Join My Team" at upper right. And thank you so much for anything you can do!