William Odette

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.

Cystic Fibrosis is not only a lung disease, it affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways. Ivy's pancreas is insufficient. She must take pancreatic enzymes to aid in digestion and absorption of food. Her current dose is 1 capsule per 3 grams of fat. This adds up to be about 25 capsules a day, which she takes with applesauce, she is a champ! Despite our greatest efforts, Ivy is unable to maintain a healthy weight, hanging out in the 1st percentile. She has surgery scheduled this summer for the placement of a G-tube. 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, multi-mineral, and N-Acetyl L-Cysteine. Ivy also takes a CFTR modulator, Trikafta. 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. Ivy does her airway clearance treatments for a MINIMUM of 60 minutes a day. This includes vest therapy, manual precursor, and hand cupping. Airway clearance treatments help break up that thick mucus so she can cough it out of her lungs.

With modern medicine, life expectancy is now 53 years old for people with CF. Although this is a great leap, we must do better! Which is why we walk, to fight and find a cure, to live a normal life. We have come so far and are getting so close but still need to raise awareness and money to get there. 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.