CF Sucks!

It hits me every so often that Cystic Fibrosis sucks. Last night a friend of mine whose 4 year old daughter who has cystic fibrosis posted this on face book

“Phew! Glad today is over! Was at cf clinic today with…..It was pretty horrible, she thought that having her port accessed today ( for yearly labs plus allergy testing) meant lots of IVs.... So she screamed.... A LOT! She got herself so worked up she was hyperventilating. But at least she didn't have to have the scratch testing done, and only one port stick. I felt like the worst mom in the world having to hold her down with all my strength.” I had tears in my eyes reading this as I have been there too, my 14 year old daughter has CF too.

Cystic Fibrosis is genetic disease that mainly affects the lungs and digestive system but has so many other ways of influencing our lives every day. My daughter looks good, when you glance at her she looks the same at any other 14 year old, in fact, most people would not believe what she has to go through each day to maintain this health. On a good day, she takes over 30 tablets, she does 40 minutes of VEST treatment to dislodge mucus in her lungs and nebulized treatments to thin mucus. When she does not feel well, we just increase her meds even more. She needs to eat high calorie diet (she cannot digest food properly and needs to take meds every time she eats) and exercise is so important. But there are tell-tail signs, like yesterday when I picked her up from a Track meet, her lips were dry and cracked, no big deal you might think, but dehydration is a huge issue for her. She has been hospitalized 3 times due to dehydration, summer can be a challenge. A constant cough is a reminder of lung damage and can keep her awake at night. When she forgets meds ( as any teenager can) she suffers from belly aches and discomfort for hours after. Cystic fibrosis is constantly there.

Even though she looks good we know that cystic fibrosis is a slow silent killer. Life expectancy is only 37 years and to reach that “milestone” takes a lot of time and energy and luck. We are lucky with our dughter, she has access to medication that hopefully will prolong her life, and goes to a great clinic at CHaD every 3 months. But the cold hard fact is there is no cure. I spend my waking hours doing everything I can to ensure my daughter has a good healthy life full of opportunities, I do everything I can to raise funds for research for a cure for CF. I haave hope and believe withteh help of the Cystic Fibrosis foundation that we will find a cure.

You can help us find a cure, we are holding the 7^th Annual Taste For a Cure for Cf next Thursday at  will be held on April 11^th at the Executive Court Banqueting Facility in Manchester. It is a fun night of music, food and wine for a great cause! We have wonderful Restaurants and winery’s joining us, music by The BYPC Jazz Combo, Emcee Mike Morin, DJ Porter Dodge, a fantastic silent auction and live auction (see attached poster!). Tickets are now on sale for $60 ($35 tax-deductible) at http://newengland.cff.org/taste and are selling fast -we sold out last year!

We are so grateful for your support and know that this event would not happen without you. A huge thank-you to the most wonderful, hardworking committee, the CF Foundation, our sponsors, everyone who donates auction items and most important all the businesses who participate, Taste wouldn’t happen without you!