Cystic Fibrosis, 65_RedRoses, and what you can do TODAY to help!


36 years ago, give or take a few months, there was a Respiratory therapist and a young man who volunteered at Cystic Fibrosis Camp. For those of you not familiar with Cystic Fibrosis here is some information:

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). 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.

Statistics:

  • About 1,000 new cases of cystic fibrosis are diagnosed each year.
  • More than 70% of patients are diagnosed by age two.
  • More than 45% of the CF patient population is age 18 or older.
  • The predicted median age of survival for a person with CF is in the late 30s.

While at that camp they grew close with many of the children and got to know each other.  They allowed themselves to form relationship with these young children, they wanted the children to have a wonderful camp experience, they wanted them to feel like “normal children”, to help them enjoy what little time they had left on this planet. All the while knowing that the bonds they would form would be short lived and their hearts would break deeply when they received the news that a child had died.  It had to take a lot to be willing to volunteer for such an amazing opportunity and yet heart wrenching one at the same time. The Respiratory therapist and the young man who volunteer at Cystic Fibrosis camp are my parents.  They met while volunteering at camp and would eventually marry and have 3 children of their own.  

Over the years I have heard stories about the children my parents had the pleasure of meeting at Cystic Fibrosis camp. I think I had forgotten that it wasn’t just what my parents contributed to the camp but it was also what they learned, shared, and witnessed.  Those children in a way live on today because of the memories my parents share.  My mother always speaks so fondly of two young sisters, 5 and 7, with big brown eyes, who were just the sweetest, gentlest, little angels.  They enjoyed everything an average little girl would enjoy, playing dolls, swimming, riding bikes, etc.  But their little bodies did not always agree with their little spirits.  They would be in and out of medical care, experience horrible coughing fits, vomiting, etc.

She has also shared the fact that Cystic Fibrosis can hit an entire family which is what happened to one such family, all four of their children had Cystic Fibrosis and yes, all four died at a young age.  As a Mother now myself I could not even image the amount of strength it must take to know that all four of your children will not live past their 20s.  The amount of strength it must take to live every day to the fullest because you never know if it will be their last. The amount of strength it must take to bury a child and know that you will be doing this again, very, very, soon. 

I was reminded of the courage and strength that those diagnosed with Cystic Fibrosis have and the strength their parents and loved ones maintain because they LOVE when I viewed the movie 65_RedRoses.

It also helped to watch Ava’s story and to understand that Cystic Fibrosis is not who she is, she is more that Cystic Fibrosis. Here is a clip that really helps explain 65_RedRoses.

 

 

After viewing 65_RedRoses I also double checked to make certain that I am an organ donor.  To know that if something did happened to me that parts of me might go on and make someone’s else’s life that much more fulfilling is a gift unlike any other.

May is CF Awareness Month

What You Can Do??

During the month of May, you can:

  • Walk in Great Strides. More than 100,000 walkers will put their best foot forward this year at more than 600 sites nationwide. Register today.
  • Be an Advocate for People with Cystic Fibrosis.
    • There are many federal and state issues that affect people with CF. You can help get our collective voice heard by contacting your elected representatives. Check out our “Take Action” advocacy page to read about the issues and learn how you can help.
  •  Download the “Cure CF” iPhone App. Use it to educate potential new volunteers and donors about the mission of the CF Foundation. Download it for free from the iTunes App store.

Tags: , , ,

Categories: Cystic Fibrosis, Uncategorized

You're off to great places! But do keep in touch!

In the words of Dr. Seuss, You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And YOU are the one who'll decide where to go. And when you get there take us with you!

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