Hello Friends and Family,
Everything looks a little different this year, but ultimately our fight against CF hasn't stopped, even though we're collectively fighting something else too.
The Great Strides Walk will be a national virtual event this year on June 5 at 4:00. https://community.cff.org/vlc/live/38/page/213?timezone=America%2FChicago#
Our local chapter is having an online pep rally event on May 30 at 11:00 and they will share a video during the event featuring Elliott and Amelie. https://www.facebook.com/events/2473152239452607/
Elliott and Amelie have the honor of being the ambassadors for the Wichita walk this year, and we had many events we were going to participate in, prior to leading the walk. Of course all of those events were canceled and the walk is now virtual. The kids have been disappointed, but we are going to do our best to still raise awareness virtually.
Our team, the Four Leaf Clovers, will be participating in the virtual Great Strides walk to honor and support our children, Elliott (age 7) and Amelie (age 5), and their cousins Jonah (age 7) and Ellery (age 4), who all have CF. We believe that their bright futures will be a direct result of the lifesaving research and innovative medical treatments funded by the Cystic Fibrosis Foundation (CFF).
We greatly need a cure for cystic fibrosis, so annually we ask everyone we know to donate to support CFF research. With the research that is being funded by the CFF, there is a real chance that our children will have access to a cure in their lifetime, and we desperately want to make that a reality.
Once a year, we ask everyone we know to support our family and the 30,000 Americans living with CF by making a donation to the Cystic Fibrosis Foundation. Maintaining hope for a cure and pursuing and supporting this research is the best way we cope with this illness. CF is considered a rare disease and the Foundation doesn't receive any federal funding. Most of the current treatments for CF are a result of research the CFF has funded through individual and corporate donations, and the increase in life expectancy for those with CF is significantly attributed to this. Your support has a definite impact!
As many of you know, CF is a life-threatening disease that adversely affects the lungs, digestive system, reproductive system, and the liver. For those who are interested in more details, I've added some "CF quick facts" below and some information about the treatments our sweet babes are on. Research continues to make major breakthroughs in treatments to improve outcomes and the life expectancy continues to be longer. CF is no longer just a pediatric disease because now some people are surviving into adulthood. Great Strides is the largest fundraiser for the Cystic Fibrosis Foundation which supports further research with a mission to find a cure.
We would welcome and appreciate any support you can give -- keeping us in your thoughts or prayers, helping us reach our fundraising goal with a donation of any amount, or joining our team. Donations support life-saving research and medical progress, and are 100-percent tax deductible. Thank you in advance for your support! This is a wonderful cause that is very close to our hearts and your help makes a difference for those affected by CF.
We need a cure for CF!
With love and appreciation,
Julie, Brett, Elliott, and Amelie McNeil
Our sweet babes
Elliott currently takes about 17-19 enzyme capsules per day, using enzymes before each meal or snack. He also takes special vitamins and follows a high fat, high salt, high calorie diet due to malabsorption. He is on Orkambi as well and takes 2 tablets twice daily. He uses an albuterol inhaler and nebulized breathing treatments (pulmozyme, hypertonic saline, and others) twice daily as well as chest therapy. For his chest therapy he currently uses a vibrating vest to help break up mucus. His treatments take about 90-120 minutes per day when he is healthy, and longer when we add extra treatments for illness. Exercise is like medicine for CF so we encourage him to be active and he loves it. He enjoyed first grade and he LOVES to read and build with Legos!
Amelie uses about 16-18 enzyme capsules per day before each meal or snack. She is also on a special vitamin and a high fat, high salt, high calorie diet due to malabsorption. She is also on Orkambi and takes this twice daily. She uses an albuterol inhaler and nebulized breathing treatments (pulmozyme and hypertonic saline) and a vibrating vest twice a day. She loved starting school this year in Pre-K and is looking forward to Kinder in the fall. She loves to creat art, dance, and play pretend.
I am continually amazed by the resiliency of our children, and so proud of them!
Cystic Fibrosis (CF) Quick Facts
In the 1950s those with CF often didn't survive to get to elementary school. Current median predicted age of survival is late 30s - early 40s. Of course we need this to continue to increase and the research funded by the Cystic Fibrosis Foundation is making this a real possibility.
Cystic fibrosis is a disease that causes mucus to be very thick. This adversely affects many organ systems.
- Mucus can clog the lungs making it difficult to breathe. The thick mucus also traps bacteria in the airways, which often leads to severe lung damage. Respiratory problems are the most serious complication for people with CF.
- In the pancreas, the buildup of mucus prevents the release of digestive enzymes that help the body break down food and absorb important nutrients. People with CF often have malnutrition and poor growth. They often need to take enzymes and require twice as many calories. Scarring of the pancreas can also lead to diabetes.
- In the liver, thick mucus can obstruct bile ducts, which can lead to cirrhosis.
- Most males with CF cannot have children and for females reproduction is very difficult.
Both parents must be carriers of the CF gene to have a child with CF. When both parents are carriers, the chances are:
- 25% that the child will have CF
- 50% that the child will be a carrier and will not have CF
- 25% that the child will not inherit either CF gene.
Currently there is no cure for CF. There are some new medications that are modulators of the faulty protein that causes CF and this is another advancement in the preventive treatments that are available. Research continues to work toward a cure.