There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe.
I walk for my daughter Alexa and hope you will support me in my efforts. Alexa is now 10 living with CF. She is a fighter! She has required a G-tube to help provide extra nutrients and maintain her weight since she was just a year old. She has had yearly hospital admissions lasting up to 14 days, beginning signs of liver disease, and several sinus surgeries to date. In June of 2018, Alexa was officially diagnosed with CFRD (cf related diabetes) and had to start 2 types of insulin-a short acting for her overnight feed coverage and a long acting for through out the day. This entails 2 daily injections, everyday along with 2 finger checks. She has gained a whopping 10lbs since starting insulin and has had much improvement with fatigue. She has been such a trooper! Her braveness and strength amazes me each and every day! Our real life superhero
A typical day in the life of Alexa consists of taking over 20 inhaled and oral medications, a vest treatment with nebulizers which helps loosen up the mucus in her lungs, enzymes before any snack,meal or drink to help her absorb the nutrients and 750ml of supplemental nutrition via her G-tube at night to help maintain her weight to ensure better lung function as she gets older. SHE NEEDS A CURE!
An exciting thing happened! On November 4, 2016 Alexa took her first dose of Orkambi-the first ever drug designed for her specific gene mutation that treats the underlying cause of CF (compared to all the other medications that only treat the SYMPTOMS of CF). This is HUGE! This gives us HOPE. Alexa had her first admission last April (and less antibiotic usage) since starting Orkambi, which is amazing considering she had yearly admissions since she was born! It may be a coincidence or it may be the advancement in treatments, either way it’s so incredible!
Orkambi was only possible by the donations from people like you, that support our fight for a CURE. This is why we are so passionate about fundraising-we will not stop until we have a cure!
To all of you that share our story, help raise funds, join us for the walk or our events- THANK YOU! Your continuous support means more to us than you will ever know.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.