My nephew is three years old. He has white blond hair and a mischievous grin. He loves all things with wheels, or that transform and has recently discovered Star Wars toys. He loves his older sister, who takes care of him just like a big sissy should. He has a bit of a temper and we all stand back when he decides to let it fly. He almost just like every three old boy I have met.
Keenan was diagnosed with Cystic Fibrosis just days after birth. My sister, his mom, who is a physician with years of training and experience under her belt, was not prepared for anything like this. Who could be? There had been no indications that he would have CF. There wasn't a family history (CF is genetic), so why, how did this happen?
They knew something was up after they brought home after birth. As a mom to a newborn and a toddler my sister struggled to stay on top of it all. I kept in touch with phone calls. After days of worrying, I got the call telling me that they finally knew what was happening with Keenie. Cystic Fibrosis. The words that made me sit down and cry into my hands.
My only knowledge of CF was a movie I watched repeatedly when I was about 11. It affected me greatly. It was called Alex. It was based on the true story of a little girl that had CF and what her life was like. It was sad, heart wrenching, and painful to watch this endearing, vivacious little girl struggle to breathe. She died very young after a long painful fight against CF. This was all I knew about the disease.
This is what I thought lay in store for my little Keenie Bee.
Thankfully there have been leaps and bounds in the development of treatments and medicines to treat CF. Treat, NOT cure. There is not cure, yet. The Cystic Fibrosis Organization, www.cff.org, has been at the forefront of education and research about this suffocating disease. The GIVE medicines to families who can't afford it! They find experimental treatments, like the saline inhaler (which was based on research that Australian surfers with CF had a better time being able to breathe), and find a way to get their patients on these programs. Now. While there is time to make a difference in their lives.
CF is not a cheap illness to live with, either. Thousands and thousands of dollars for each hospital visit, which Keenan has had many but not as many as some patients. High-tech equipment that fills a family van, just to travel to see extended family or take a vacation. Medicines that are constantly being adjusted to suit his growing needs and possible new threats from illness, which means a new bottle, a new vial and more money. It is mind boggling how the families who are affected by this have the strength or the means to get through each day. But they do.
Since Keenan and his family live in VA and the rest of us live in SC, there was only so much we could do to help. Personally, I felt helpless to help! I so wanted to be there to babysit for my sister, clean the house for her, give her a shoulder rub, take the Keenie's big sister out for a girl date with her Aunt, make a meal...But I couldn't do that every day this far away.
So I started Keenan's Cousins. It is our CF Great Strides walk team. Keenan's Aunts, Uncles, Cousins, Grandparents, friends, and people he has never met walk annually in the Great Strides walk in our area. We raise money, that goes directly to CF and is used (not to line the Executives pockets) for the most-up-to-date research and development on new treatments.
Today there is hope. Keenan can live a long, full life. In the 1950's children with CF did not live through elementary school, today most can expect to live into their 30's, 40's and beyond.
So, what does all this have to do with you? I mean... yeah, it's sad, right? Yeah, it sucks- all these diseases and people suffering, but what can you or I or anyone really do?
You can donate. Today.
Whatever you can: $.50, $1.00, the amount you would spend on a Grande Venti that tastes like crap, the $5 you would've used to wash your car, or the $25, $50, $100 that you think you can share.
Your donation will make a difference in Keenan's life.
Keenan with his "space suit"- a vest vibrates his chest while he inhales two different medicines. This treatment take 45 minutes and he does it twice a day.
Also, as a thank you for donating throughout May. I will mail you a coupon good for $4 off one pound of Cashua Coffee! Regularly it is $12 a pound plus $2 shipping, but when you redeem this coupon, you will only pay $10 for a fresh roasted, delicious pound of coffee to be delivered right to your door!
So please...please...please donate today.
You can see my past links, including a story I wrote for my sister last Mother's Day about being a mom to a CF child here and here. The link to donate will be up on the in the left column throughout May.