Cystic Fibrosis Awareness Month

Cystic Fibrosis Awareness

For those of you who know Ryder Sutcliffe, you know what an incredible, little warrior he is. Even though he looks and seems completely healthy, he is battling a life-long disease called Cystic Fibrosis. Before he was diagnosed as an infant, I knew very little about the disease, how it effects the lives of thousands and how incredibly common it is to be a carrier of the CF gene.

Since May is Cystic Fibrosis Awareness month, I thought I would offer-up a few facts to others who, like me, were not aware.

“Be a warrior, not a worrier”

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What is Cystic Fibrosis?

It is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure.

In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Cystic fibrosis affects about 30,000 people in the United States, and 70,000 worldwide. (Source: Cystic Fibrosis Foundation)

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Is there a cure?

There currently is no cure, but thanks to improved medical treatments and care, people with CF are living longer, more fulfilling lives. Babies with CF grow, develop and do what other babies do. Children with CF go to school, play sports and get their driver’s licenses. People with CF can go to college, pursue successful careers and have families of their own.

How is it treated? 

To stay healthy, people with CF must follow a regular treatment routine. In addition to a nutrition and fitness plan, there are drugs that help clear the thick, sticky mucus from airways and reduce inflammation as well as antibiotics to treat CF lung infections.

Ryder must take enzymes every time he eats to help his body digest the food. That’s EVERY time he eats. Whenever my girls are on antibiotics, I dread giving them their TWO doses a day. I can only imagine the amount of patience and diligence that is required, as a parent.

He also has to wear a vest twice a day for 30 minutes to help break-up the mucus, which he is not a fan of.  The vest vibrates the chest to loosen and thin mucus. While wearing the vest he does a breathing treatment with two types of medicine and salt water to help thin the mucus.

The family also makes the trip up to Stanford four times a year to monitor his health and make sure he is gaining weight like he should. Since the mucus makes it hard for the body to absorb fat, weight gain is a sign of good health in people with CF.

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What is the CF gene?

Before having Ryder two years ago, Ryan and Anne had two perfectly healthy boys. They weren’t aware that they were both carriers of the CF gene.

To have cystic fibrosis, a child must inherit one copy of a CF gene mutation from each parent. People who have only one copy of a CF gene mutation do not have CF. They are called “CF carriers.” It is very common to be a carrier. In fact, 1 in 30 Caucasians are carriers of the CF gene.

Each time two CF carriers have a child, the chances are:

  • 25 percent (1 in 4) the child will have CF
  • 50 percent (1 in 2) the child will be a carrier but will not have CF
  • 25 percent (1 in 4) the child will not be a carrier of the gene and will not have CF

Testing can be done to determine if you and your partner are carriers before getting pregnant.

There are thousands of different mutations of the disease, and although they do offer genetic testing for pregnant women, they only test for the 30 most common mutations.

Thankfully, Ryder has the most common mutation (Delta F508). They are making great advances in treatment for people with that mutation.

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How can I help? 

The Cystic Fibrosis Foundation is dedicated and determined to finding a cure. Their focus is to support the development of new drugs to fight the disease and to improve the quality of life for those with CF. There are several ways to help. You can make a donation to the Cystic Fibrosis Foundation, here, if you would like.

You can also participate in Great Strides, which is the largest, national fundraising event for CF.  Each year, more than 125,000 people participate in hundreds of walks across the country to support the Foundation’s mission to cure cystic fibrosis. Find a walk near you, here.

Another foundation that has been a huge help to the Sutcliffe family is called Jack’s Helping Hand. Jack’s was created to assist children in the community battling cancer and other diseases who have unmet physical, mental and medical needs. Since Ryder has to make trips up to Stanford four times a year for treatments, Jack’s Helping Hand has helped with the out-of-pocket expenses it requires to make the trip up there.

I love that for his first and second birthdays, the Sutcliffe’s have asked for donations to Jack’s Helping Hand in lieu of gifts. If you would like to make a donation, you can do so, here.

“Forever blessed with every breath”

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Ryan and Anne try really hard to maintain a normal lifestyle for Ryder and let him do the same things other kids do. They don’t let fear keep them from going certain places or doing certain things – they simply use caution and common sense.

I just have so much respect for Ryan and Anne and how strong they have been and how positive they remain. You guys are an inspiration!

Ryder is such an amazing little guy and we are so lucky to have him in our lives. We are so excited to watch him grow, reach for the stars and kick CF’s butt!

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