One breath at a time: being the parent of a child with cystic fibrosis

Parenting. One of the hardest jobs, in my opinion, because you are driven by love and have an unspeakable bond to a tiny human being. Emotionally (and sometimes physically) attached, a parent is held responsible for equipping children with the tools they need to survive, until they can go out on their own and take on the world themselves.

We want our children to excel. To be happy. And healthy.
 
But what happens when something shakes that wish to the core?

Brock Noble was only 2 1/2 weeks old when he was diagnosed with cystic fibrosis. His mother, Cecelia Noble, was like any other parent, taking steps to ensure Brock received the proper nutrition and love from the very beginning.

In the United States, all newborn babies are screened before they leave the hospital to identify serious or life-threatening conditions. The importance of this screen is to diagnose and start the child with the proper treatment before they become ill. Some symptoms do not surface immediately and the newborn screen allows parents and caregivers to create a plan of action for healthy living.

Cystic fibrosis is among the list of conditions on the newborn screen and when Cecelia Noble received the call from her pediatrician's office that Brock's test was abnormal, confusion topped the list as one of her many emotions.

"I was caught off guard. I didn't even know what CF was and the sense of urgency from the doctor's office to meet would make any parent worry." said Cecelia. "But, we were fortunate that Brock was diagnosed at an early age through the newborn screen. My husband, Doug, and I immediately met with Dr. McColley at Children's Memorial Hospital and our CF Care Team who guided us through the nature of the disease and what was in store for Brock physically."

What Cecelia and Doug found out was that cystic fibrosis, an inherited, chronic disease, attacks the respiratory and digestive systems of the body. At the cellular level, a mutated gene produces a thick, sticky mucus that eventually clogs the lungs and makes digestion difficult. Diagnosed with 2 copies of the Delta f508 gene, Brock carries the most common mutation.

The Nobles, never knowing they were carriers of the disease, were faced with the knowledge that their son Brock was diagnosed with a disease that has no cure. Following the tailored treatment plan designed by Brock's CF Care Team, the Noble's proactive determination to give Brock the healthiest life possible paralleled the determination of the Cystic Fibrosis Foundation's aggressive research and medical treatments.

"The support we received through that first initial meeting was so positive, so genuine." said Cecelia. "Yes, Brock has CF. But to look at him, you would never know what is going on inside of his body."

Because the severity of the disease varies from person to person, typically, you would never know someone even has CF. Treatment for the disease includes taking pancreatic enzyme supplement capsules with every meal, airway clearance techniques, multi vitamins and liquid medicine inhaled through a nebulizer.

Airway clearance techniques (ACTs) are treatments that help people with cystic fibrosis stay healthy and breathe easier. ACTs loosen thick, sticky lung mucus so it can be cleared by coughing or huffing. Clearing the airways reduces lung infections and improves lung function.
Designed to be a support system, a CF care team, backed by the Cystic Fibrosis Foundation is also meant to help extend the median predicated age of people with CF to the mid-30's. (*Info found on cff.org)

"Needless to say, we were upset. The fear of the unknown and then finding out exactly what cystic fibrosis is..." said Nena Stockwell (grandmother to Brock) through tear filled eyes. "But when Cecelia came out of her meeting with the Care Team, there was a relief about her. The first thing she said was, "Mom, it's going to be okay."

The CF National Care Center network provides "expert cystic fibrosis care for people living with the disease. In fact, the National Institutes of Health has cited the CF care center network as a model of effective and efficient health care delivery for a chronic disease." (**Care center information found on cff.org)

Outwardly, an almost 18-month-old Brock is the picture of health. Short of a few colds, Brock is like any other toddler. He is on the move. He loves to eat. He loves his pacifier and his dog.

At the end of the day, Cecelia needs support and while she is supported by her husband and family, there is something to be said for the encouragement from other mothers who are experiencing CF firsthand.

"I found out about a group of women who are all connected to CF in some way and we meet every couple of months to chat.  These women face the same challenges and it is refreshing to be in their company. I also subscribe to a blog called, Two Salty Boys, which is a very candid and honest account of raising two children with CF. I need to laugh about it sometimes."

One way the Noble family has supported the Cystic Fibrosis Foundation in their constant endeavor to find a cure is through their participation in the Foundation's yearly Great Strides National Walk Event. In 2010, the Fox Valley Great Strides walk (previously the Geneva Great Strides walk) raised $46,000 and rallied 250 supporters. The goal for all 650 walk sites in 2011 is $40 million, with the Fox Valley walk (in St. Charles) on pace to raise $50,000.

On Sunday, May 22, Brock and his family walk to help the Cystic Fibrosis Foundation raise money to support research to find a cure. They will join countless teams who support a family member or friend who has been diagnosed with CF. Sponsor Brock's Brigade at cff.org or start your own walk team!

To learn more about Cystic Fibrosis and the Cystic Fibrosis Foundation visit cff.org or contact Amanda Zar at azar@cff.org

*Cystic Fibrosis Foundation. 4/12/2010. Airway Clearance Techniques. Retrieved 3/15/11 from: www.cff.org/treatments/Therapies/#ClearingtheAirways
**Cystic Fibrosis Foundation. 12/14/2010. Care Center Network. Retrieved 3/15/11 from: www.cff.org/treatments/CareCenterNetwork/

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