My Great Strides Story
Ivy Lou was born June 16th, 2021. At one week old we received the phone call from our family practitioner that Ivy has Cystic Fibrosis. Our world as we knew it would never be the same. Cystic fibrosis is not a disease that takes a break. It affects our everyday life.
Ivy takes 30-40 pills a day just so she can eat. Ivy's pancreas is insufficient. She must take pancreatic enzymes to aid in digestion and absorption of food. People with cystic fibrosis have trouble absorbing fats, which means they have trouble absorbing vitamins that need fat to be absorbed -- A, D, E, and K. These fat-soluble vitamins are critical to normal growth and good nutrition. Ivy takes a high dose of vitamins A, D, E, K, and C, along with a multivitamin, multimineral, N-acetyl cysteine, pro and prebiotics. She also endures airway clearance treatments for a MINIMUM of 1 hour, every single day, to help break down built up mucous in her lungs. Ivy also takes a CFTR modulator, Orkambi.
People with CF have mutations in the CFTR gene, which is supposed to create a protein that regulates the flow of water and chloride in and out of the cells that line the lungs, pancreas, and other organs. However, CFTR mutations can lead to the production of defective proteins or to producing no protein at all. This results in thick secretions that can cause infections, damage, and problems with the lungs, pancreas, and sinuses among other organs. CFTR modulators target the defective proteins and work to control their effects by moving them to the cell surface and helping them function properly.
With modern medicine, life expectancy is now 53 years old for people with CF. Although this is a great leap, it isn't good enough! This is why we walk, to fight and find a cure, to potentially live a normal life. We have come so far and are getting so close but still need to raise awareness and money to get where we need to be. Please, if you can, help us with this fight. Help Us find a cure so that Ivy and others living with cystic fibrosis can live a long normal life. Fuck cystic fibrosis!
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By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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