Hayley's Gang

This will be our 13th year doing the Great Strides Walk. As most of you know my daughter, Hayley, has Cystic Fibrosis (CF).

Hayley was diagnosed with CF when she was three months old. She is now 13 years old and she is a seventh grader at Memorial Park Middle School. She sings in choir at school and is involved in dance troupe connected to her school. She just finished her first year of show choir and LOVED it! She is also quite a performer if I do say so myself :)


Hayley has had a very rough year since the walk last year. She has been inpatient in the hospital and on IV antibiotics three times since the last walk (October, January, and March). She also had had two sinus surgeries. The sinuses are a new issues for us related to the Cystic Fibrosis, just like the Cystic Fibrosis Related Diabetes (CFRD). Hayley likely will have sinus issues for the rest of her life, with more sinus surgeries in her near future.

If you just look at Hayley, you probably would not even know she has CF. But she struggles and fights for her health 365 days per year. She endures at least 3 hours of breathing treatments and vest therapy sessions each day when she is healthy, just to stay healthy. And when she is sick, more treatments, up to an additional three hours are added to help her get better faster. Hayley must take enzymes with every meal and snack to help her absorb the fat and nutrients in her food. She currently takes over 40 pills per day. In addition to her treatments and enzymes, she takes eight other medications on a daily basis just to stay healthy. In addition to all that, Hayley does monthly IVIG infusions through her port which last over three hours for each infusion.

I really don't know how she does it, she simply AMAZES me with how strong and brave she is! She does have her moments where it all can be overwhelming and gets her down, but it doesn't last long and she is back at it fighting just to stay healthy!

In her short life, she has already had thirty-two (32) hospitalizations due to her CF, most lasting several days to two weeks sometimes. She has had three surgeries to place new ports (a port is a device surgically implanted under her skin in her chest that is direct access to her veins for IV antibiotics and blood draws). Hayley is a trooper and such a fighter! I am so immensely proud of all that she has accomplished and the way she fights to stay healthy, but what Hayley wants more than anything is to be a "normal kid". She wants to sleep in late, instead of getting up at 5:30am to do all of her treatments before school. She wants to eat whatever she wants when she wants without having to take enzymes and insulin. She wants to play outsideafter school, instead of doing more treatments. She wants to not spend days at a time in the hospital and hooked up to IV medications. She wants to enjoy school, without missing so many days and always having to play catch up. She has already missed 28 days of school this year alone!

Cystic Fibrosis is a genetic disease chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

•clogs the lungs and leads to life-threatening lung infections; and

•obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Please help us raise money to find a cure for Hayley and all of the other kids and adults add more tomorrows. We lose so many people to CF each day.

Every dollar helps get us closer to finding a cure! Please be thankful for the healthy children in your life and make a donation to help cure Cystic Fibrosis.

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!

Thank you!!

Sincerely,

Rebecca Quaintance