Dear Friends and Family,
On Sunday May 19, 2019, our family is walking on behalf of our eight year old daughter, Scarlett, to find a cure for her disease, Cystic Fibrosis. Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide).
The type and severity of CF symptoms can differ widely from person to person. Scarlett, who is currently a third grader at East School, has been very blessed, thus far with her health. We have been extremely fortunate this school year in keeping her healthy. Both the school and her classmates have done an excellent job being extra careful in the classroom, as it relates to hand washing and hand sanitizing. Scarlett is a very independent, outgoing, ray of “sunshine”. She loves being apart of her Dance Company team partaking in jazz, tap and ballet. As well as participating in taekwondo, basketball, soccer and softball, and of course playing with her friends. Scarlett has two loving brothers: Tristan, ten years old and Sawyer, five years young.
In order for us to keep Scarlett well, breathe easier and prevent her from what potentially can come, she does airway clearance every day, twice a day for 20 minutes and she takes inhaled medicines. During her physical therapy sessions, she wears an inflatable vest, which is attached to a machine that vibrates her chest at a high frequency to loosen and thin mucus. Clearing the airways reduces lung infections and improves her lung function. Just recently, Scarlett has been resisting wanting to wear the vest and questions have slowly started to surface, as to why she’s the only one who has to wear it. Naturally, as parents, we feel upset when we see her struggle, each time she puts on the vest. On the other hand, we know it’s necessary and we try our best to verbalize the importance of her health without saying too much, at such a young age. This has been our first hurdle, as Scarlett gets older we will provide her with more information about cystic fibrosis. At this time, we explain her need for this therapy by telling her she is allergic to germs and her vest allows her lungs to stay healthy. Scarlett is aware that “her walk” or as she calls it “her parade” is coming up shortly, and it’s to celebrate the success she has achieved in her daily therapy. She is super excited to see everyone again, not only to walk with all her friends but to eat gelato and see our latest entertainer with his bubble show!
Last May, we were overwhelmed by the support and amount of funds raised for our daughter, Scarlett, and the thousands of others who live with CF. Our turnout, in New Canaan, was spectacular! Team “Sunshine for Scarlett” was voted for the fifth year in a row, as the largest team and we ranked number one for funds raised ($25,000 aprox). Over 350 friends and family wore yellow and joined our efforts to beat this disease. We cannot express how important this day is to us and what it represents. As parents, of a child, who has a fatal disease, we pray everyday that our daughter will be able to live a full and long life. The only way this can happen is by our keeping her as healthy as possible, doing her daily PT, going to both the Yale Clinic and the Columbia Clinic, eight times a year, keeping up with blood draws, x-rays, breathing tests and raising money, so the scienctists can CURE CYSTIC FIBROSIS!
Finding new medications to fight CF and to ultimately cure the disease is the driving force behind the Cystic Fibrosis Foundation. Research is moving at an unprecedented pace, and with the increasing number of potential life saving drugs, the future for those battling CF has never been brighter. To achieve this goal, the foundation aggressively invests in drug-development research with the most successful and innovative biotech companies and scientists in the world. Current estimates suggest that it costs more than $800 million to move a drug from its concept stage to the market place. There is a critical need to help provide support to pharmaceutical and biotechnology companies that conduct drug discovery in small-population diseases such as CF. Without adequate funding the foundation will not reach its goal.
Please help us make our dream come true and CURE CF. Every dollar counts!! Join us in yellow, Sunday May 19th, 8:30am, New Canaan High School, for a 2.8 mile walk thru Waveny's trails and help us bring “sunshine” to the families who battle this disease every day of their lives and give them hope for more tomorrows.
Yellow is our color so please don’t forget to wear it on May 19th, at New Canaan High School! For those alumni walkers, please wear your “Sunshine for Scarlett “ team shirt. We will have more team shirts at the walk while supplies last! We look forward to seeing you all soon…
With love and tremendous gratitude,
Ian, Jenny, Tristan, Scarlett and Sawyer
297 Smith Ridge Road, New Canaan, CT 06840
P.S. Your donation could double in size if your employer has a charitable matching gift program. To see if this is an option for you, please speak with your HR representative or visit www.matchinggifts.com/cff.