Who he is: Declan Shain McClure born February 3, 2006

What makes him special? Declan was born with a devastating illness called Cystic Fibrosis.

Declan has been hospitalized more times than his parents can count. Even something like a minor cold could lead to pneumonia overnight. Most hospitalizations last approximately 2 weeks. Every part of his life has to be monitored. He has to have several breathing treatments and medications administered through out the day. He also has to have several chest physical therapy sessions daily. Declan has had 2 surgeries. He can’t play outside without the humidity, mold, and pollen counts checked and be non-existent. He can’t travel without his portable nebulizer and all medications. Declan is lucky he is still young, as CF patient’s get older their condition gets dramatically worse.

What is Cystic Fibrosis?

Cystic Fibrosis is the most fatal genetic disease in the US. There are approximately 70,000 people worldwide with the disease, and about 30,000 are in the US.

How do you get CF?

You can't catch the CF. Cystic Fibrosis is a hereditary chronic illness. A person is born with the disease and to have it the person must have receive a defective form of the autosomal recessive gene CFTR (cystic fibrosis transmembrane conductance regulator) from each parent.

Most people that have the defective gene don't know they have it, until they have a child that is born with CF.

When two people with the defective gene have a baby there is a 25% chance the child will be born with CF.

How does CF affect the body?

CF affects the body of every patient differently, but it targets all of the same areas.

The CFTR gene is responsible for producing the proteins our body needs to make mucus, sweat, saliva, tears and digestive enzymes properly. It is responsible for how chloride is transported through our bodies and helps control the movement of water in tissues and maintain the thinning of mucus and other secretions. It controls how sodium flows through our body. The functioning of these elements ensure that organs such as the lungs, pancreas, liver, and intestines work properly. When the gene is defective it causes abnormally thick mucus that is hard to break up. The blockage caused by the thick mucus causes lung infections, makes it to where our bodies can't absorb fat, causes serious digestive problems, clubbing of the fingers and toes, and progressive disability due to multisystem failure.

Since the way chloride and sodium isn't working properly, people with CF also sweat a lot and get over heated easily.

The imbalance of salt in the sweat can lead to heart problems, such as strain because of malnutrition and abnormal heart rhythms.

Infertility is also common with CFers and it affects both men and women. Statistics show that at least 97 percent of men with CF are infertile, and are missing the tube that connects the testes to the ejaculatory ducts of the penis, but are not sterile and can have children with assisted reproductive techniques. About 20% of women with CF are infertile. Others may have fertility issues due to thickened cervical mucus or malnutrition. In severe cases, malnutrition disrupts ovulation.

What are the symptoms?

Frequent infections, poor growth despite having a ravenous appetite, foul bulky stools or constant constipation, salty tasting skin, persistent coughing, and nasal polyps.

How are you diagnosed with CF?

CF can be diagnosed through newborn screenings, genetic and sweat tests.

What is the treatment for someone with CF?

Treatment varies on the patient. No two patients are the same.

No matter how well or poor each CFers health is they all have several medications, nebulized treatments and CPT (Chest Physical Therapy). This fills up a great portion of the day for them and their caregivers.

Will the medication get rid of CF?

No, there is not a cure for CF. It is a chronic illness and the condition of each patient deteriorates after time. That is why proper care, medication, further education and especially awareness is key to helping in the fight against CF.

How can I help?

There are many ways to help us in the fight. First and foremost is helping get the word out about the disease. This is the most fatal genetic disease there is in the US and the government doesn’t help in supporting grants or research for better treatment for CFers. We want to get the word out that way we are closer to a cure. So with a simple forward to your friends by way of this application you can possibly help a pregnant woman get her child diagnosed early, before it’s too late.

Second would be donations, every penny truly counts, and is 100% tax deductible. The Cystic Fibrosis Foundation is the main source for funding in the vital research, education, providing the necessary medication and supplying doctors who are dedicated to the fight and well being of those that have CF.