Isla was diagnosed with CF at 2 1/2 weeks old. In the 2 ½ short years since Isla’s diagnosis, we have come to know support in ways we could never imagine. When they say it takes a village to raise a child, it takes village and more to raise a child with a chronic medical condition. We have been amazed by the amount of assistance and support we have received from family, friends, co-workers, and strangers. We are also amazed each day at the spunk and determination of our child. Isla takes around 30 Enzymes a day, 9 milliliters of liquid medication for allergies and digestion, 5 vitamins to help her levels stay within the normal range, and does at least an hour of breathing treatments. Her breathing treatments include use of her vest, shaking her mucus loose in her lungs, while breathing in 3 different medications through a nebulizer machine. Last winter, Isla spent 21 days in the hospital at Blank. During her final, 15 day stay, she received her first PICC line. Each year she undergoes a bronchoscopy to check for changes in her lungs. She also has blood drawn around every 3-6 months. This folks, is the norm. But this is not what want we want for our child. We want less medications, less treatments, and most definitely less hospital stays and procedures. We want a cure.
Events like the walk, the gala, shoot for a cure and the events hosted by families of people living with CF help fund the research and work for medications that making living with CF better. After the insurance approval, Isla was able to start Orkambi this year. This is a drug that was developed and funded soley by the Cystic Fibrosis Foundation. It would not have been possible for Isla to have this drug without the funding provided by people, like you, who provide their support and donations. Though this is amazing progress and wonderful for our family, there are more than 1700 mutations that can cause CF. And there are families whose children do not have the right mutations to take this wonderful medication. This is why we keep working, keep fundraising, keep research going because though medications are great but they are able to help everyone, and the disease remains. This is why we need a cure.
I look at my daughter each day and I cannot imagine a world without her in it. I can’t imagine her leaving behind all the wonderful relationships she’s developing, and will develop, too early because of this horrible disease. But I do feel we are in a wonderful time for her to be diagnosed because I truly believe there will be a cure in her lifetime. Thank you again for being a part of the work towards this cure.
Please joins us in our journey towards a cure for our little Isla Bean.
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 them and hope you will support me in my efforts.
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.