Great Strides is our chance to raise awareness so Rose & thousands of others can live longer & healthier lives!
I'm happy to say that Rose is leading a healthy, active, normal life, aside from her hour of percussion and nebulizer therapy every day, the enzymes she takes with every meal, and the tube feedings she receives (now only) four nights a week. Because my sister Laura and her husband Mike have been very regimented with Rose's care from the moment she was diagnosed at 12-hours-old, she has been able to maintain fully functioning lungs and a healthy body weight, which helps keep her lungs strong.
You may wonder why my family keeps fundraising since the breakthrough drug Orkambi has been approved and released into the CF community. While it is greatly helping older, sicker patients, resulting in fewer hospitalizations, increased weight gain and lung function for them, and also helping younger, healthier patients like Rose maintain good health, it is still not a cure for this progressive and deadly disease.
Even with all that is done right with Rose's treatment, she is still at risk. Pneumonia can develop easily in her compromised lungs from nothing more than a common cold, scarring her lungs and decreasing their overall health. We also fear certain bacterial strains, not harmful to you and me, which could be deadly to a CF patient. All it takes is a chance exposure to foil all the hard work Rose has done up until now.
It is fantastic that Orkambi may keep Rose’s lungs healthier longer, which is the most compromising aspect of this disease, but she still does have to do her 2x daily therapy, take her pills, and be on a feeding tube. And it’s hard to say how well Orkambi can keep Rose out of the hospital and fight deadly airway bacteria.
Wouldn’t it be wonderful…
…if Rose didn’t have to do her hour of time-consuming, vibrating therapy every day?
And wouldn’t it be wonderful if she…
…didn’t have to take pills every time she ate, usually at least 20 pills a day?
…wasn’t attached to her bed every night, unable to roll around or sleep on her stomach because of her G-tube?
…could ride piggy-back, wrestle, or jump off a diving board without worrying her G-tube will get caught and rip painfully out of her stomach as it has done a few times in the past?
…didn’t have to worry about bacteria that could cause her health to decline rapidly and even prove fatal?
…didn’t have to hold her breath and cover her nose in panic every time she passed a smoker, campfire, or grill?
…and if we didn’t have to worry each time a cold rolled through our house that Rose will end up in the hospital?
These things are the reality of Rose’s life. She accepts them and rarely complains, but I know she would welcome in a heartbeat a life without these worries.
When the CF Foundation was founded back in 1955, the median life expectancy for CF patients was around 2-years-old. Today, it is 46.2. We hope to see this number increase with the advent of Orkambi and future developments. For older patients fighting for their lives right now, many enduring double-lung transplants in their 20s, a cure truly is urgent.
In the meantime, Rose continues to fight every day to keep her health in line with the rest of us. It isn’t easy, but she does it with rarely a complaint, proud to have participated in the Orkambi trial, which should help her stay healthier as she gets older, when CF will truly start challenging her body. We know her future is brighter because of your support!
This year our Great Strides team, ROSE’S BUNCH, will be walking in Milwaukee on Sunday, May 19th.
Please help support the Cystic Fibrosis Foundation by making a tax-deductible online donation by selecting the "Donate to Me" button above.
Your generous donation will help so much in our fight to find a cure. Also, please make sure to ask your employer if they provide matching funds. To my Baxter colleagues, Baxter will match your donation.
Thank you so much!