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Sixty-Five Miles for Cystic Fibrosis
On September 30th, I will ride my bike 65 miles to support my son Cayleb, promoting awareness and raising money for the Cystic Fibrosis (CF) Foundation. Officially diagonosed with CF at two weeks old, Cayleb's life has been anything but 'normal' since then. Every day, Cayleb has two separate breathing treatment therapy sessions totaling about two hours each day. In addition, Cayleb takes an average of twenty pills per day to ensure continued health. That's a lot to manage for a nine year old child.
Cystic Fibrosis is a rare genetic disease with no cure. The average life expectancy of patients with CF is early forties, the age I am now. CF patients have difficulty breathing, are often hospitalized and always have chronic lung issues. Another dibilating component of Cystic Fibrosis, depending on the gene mutation the patient has, is problems with the digestive system that often presents itself as 'failure to thrive.' These CF patients suffer from pancreatic insufficiency which prevents the nutrients from food to be absorbed into their bodies. To combat this, CF patients must take multiple enzyme pills each time they eat to ensure proper absorption. Cayleb has both the lung and digestive issues associated with Cystic Fibrosis.
In addtion to CF, Cayleb was officially diagnosed with asthma in the summer of 2016. When a person with CF has asthma, it can be much more detrimental than a normal child suffering from asthma as the lungs are already compromised due to CF. To combat his asthma, Cayleb increased his daily nebulizer treatments by inhaling hypertonic saline soultion twice per day, further thinning the thick mucus that builds up in CF patients' lungs. Once the nebulizer treatment is complete, Cayleb must inhale an oral steriod and rinse his mouth thoroughly to avoid developing sores from the inhaled steroid.
There are about 30,000 Americans living with CF, a mere fraction of the total population in the United States. Given this, there is virtually no federal funding available to help support research for new therapies and medications to help those fighthing CF. In addition to the rarity of this disease, there are literally thousands of CF mutations, making it even more difficult to find a cure for those fighting CF.
The Cystic Fibrosis Foundation (CFF.org) operates solely on the donations of private individuals and corporate entities. For this reason, it is critical for the parents, peers and loved ones of CF patients to continue to raise awarness and money to combat this terrible diesase. With your support, the CF Foundation can continue to develop new therapies and medications that will hopefully one day lead to a cure for all CF patients, making 'CF' stand for 'Cure Found.'
Please consider supporting me in this effort by donating to the Cystic Fibrosis Foundation through our team, Cayleb's Crusiers. Your tax-deductible donation will fund research for new medications and therapies to help those fighting CF, including Cayleb. Together, we can make a difference. Thank you for your consideration. I sincerely appreciate your support.