Feeds:
Posts
Comments

Archive for March 21st, 2012

My nephew Chase had Cystic Fibrosis. If you are not familiar with the disease, it is a debilitating disease. Here’s a brief description from the Cystic Fibrosis Foundation website:

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.

Trust me–it’s far worse than that brief description conveys. Chase was diagnosed when he was a toddler, and thereafter a good portion of his life was devoted to various treatments in an effort to extend his life as long as possible. He spent long days and weeks and months in the hospital. But somehow he managed to retain a healthy kidlike attitude to a certain degree, despite his illness. He knew how to milk it for all it was worth, and I know his parents struggled with a desire to indulge him as a way of compensating but knowing that they had to draw a line at the same time.

When Chase was little, he was being a stinker like only he was able to do, and his mother, driven to her wits, told him he was a little shit. “No!” he insisted, “I’m a big shit!”  Not too long before he passed away, he was, once again, being a big shit, and when I said that to Clover (not in so many words), he gave me an injured look before leaving the room. What? He was being a big shit that day!

There has been a lot of research done in an effort to not only find the cause of cystic fibrosis, but to find a cure for it. The Cystic Fibrosis Foundation does an amazing job in raising funds to fight CF and support children and families who are struggling with the very real effects in their lives.

The Cystic Fibrosis Foundation Is…Hope in Action

Until we end this disease, our team will work tirelessly to extend and enhance life for those with cystic fibrosis by functioning as: 

  • Research pioneers, blazing new trails in drug development;
  • Fund-raisers, securing the money needed to support the fight against CF;
  • Advocates, keeping CF a top priority in government, industry and research;
  • Stewards, using your donations to help fuel the creation of new drugs;
  • Caregivers, linking patients and families to specialized CF care; and
  • Helping hands, offering support, information and resources.

The Cystic Fibrosis Foundation Is…Building on Success

  • When the Foundation was established in 1955, children with CF rarely lived long enough to attend elementary school. Due in large part to the Foundation’s aggressive investments in innovative research and comprehensive care, many people with the disease can now expect to live into their 30s, 40s and beyond.
  • In 1989, CF Foundation-supported scientists discovered the defective gene that causes cystic fibrosis — a monumental breakthrough on the road to a cure.
  • The Foundation played an integral role in the development and FDA approval of four therapies that are now a routine part of treatment regimens for many with CF. The Foundation is actively supporting nearly 30 potential new treatments currently in development — that’s more than in the entire history of the disease. One groundbreaking potential drug that treats the underlying cause of CF will be submitted for FDA review in late 2011. 

The Cystic Fibrosis Foundation Is…Still Making Progress

We are proud of our achievements. But, we still have much to do. Learn more about what the Foundation does to fight cystic fibrosis and how you can get involved.

If you’ve never had a disease this grave touch your life, you are so blessed. Hug your children, your siblings, your parents. And then please consider making some type of donation to CFF.  There are dozens of ways you can help, whether it be with donations of time or money.

Advertisements

Read Full Post »