Polly

Evan’s boy Scout troop has been recycling newspapers to supplement summer camp tuition for the boys in his troop for years. The market for newspaper recycling has severely dropped in the past few years.The drop off shed that they have been using is now vacant and available. The troop thinks it would make a great little chicken coup. They would like you to know that the bottom has been replaced within the last year. It needs to be moved by the next owner , and they would like to have around $80 for the little building. It has a 4′X7′ footprint with a 6′ headroom. It would also make a good little outdoor playhouse. Let me know if you are interested, especially if you didn’t get the chicken coup deal at the auction.

Maggie

Cystic fibrosis is an inherited disease that effects multiple systems in the body. Most notable, the pulmonary system is effected and the digestive system. The disease is caused by a “mis-folding” of a protein in the cells. This prevents chloride ions from transferring through the cell walls. The body’s reaction to this imbalance is to create a thick plaque-like mucus on the linings of the lungs, throughout the digestive system, and the reproductive system.

When the mucus builds up in the lungs, it creates a milieu for many bacteria to thrive, and the immune system attacks. Many of the bacteria will succumb to antibiotic treatment, but they form a cyst and lay in wait for the conditions to be ripe for growing and blooming. They never really go away completely. The result of the attack leaves toxins that destroy lung tissue. The other thing that happens is that bacteria that are resistant to many antibiotics are commonly grown in the lungs. Patients must take “designer” antibiotics orally, in an inhaled form, and intravenously.

The digestive system is effected by the mucus buildup by preventing many of the digestive enzymes that help to metabolize fat and proteins. CF patients are chronically malnourished unless the diet is adjusted to dramatically increase caloric intake and that it be heavy in fats and proteins. Their food pyramid is essentially inverted. Quite often diabetes is also developed because of the inability to get enough insulin into the digestive system.

The median age for patients with CF is 37 years. That simply means that of the 30,000 people in the US with CF today,only 15,000 of them will make it to the age of 37, younger or the same age as many of you parents. Most of them will die before middle age.

My son, Evan, was diagnosed during his second year of preschool. He had just turned 5 years old. He was a very sick little toddler. We went to many different doctors and treated him for allergies, ,enlarged adenoids, multiple sinus infection, pneumonia. Today, he would not have to suffer those misdiagnoses. About 4 years ago the state of Oregon mandates that newborn screening occur. All cases are diagnosed at birth now. Treatment is started immediately with special diet and respiratory therapy. The younger you start these treatments the better the health outcomes.

Evan is now 16. He has some serious lung damage. He has some significant GI issues. He is finally above or at the 50th percentile in weight and height. He takes about 10 prescribed medications daily. He does respiratory therapy 3 to 4 times a day. He gets respiratory illnesses frequently. He grows MRSA in his lungs and also another family of bacteria that is extremely resistant to most antibiotic treatment. He has a gastrostomie, or a permanent port that is in his stomach. He gets supplemental feedings in the GI port while he sleeps at night and takes in around 2,000 calories.

Evan loves to cook. He is usually surrounded by a bevvy of friends that are good and supportive. He plays the ukulele, the didgeridoo, and sings like a maniac. He makes a mean rub for the barbecue, and likes being in high school. He has an interest in design and engineering, aeronautics, social justice, environmental stewardship, camping,canoeing, and the visual arts. His sense of humor is quick. I hope you get to meet him at the Trike-a-thon.

The CF foundation helps to fund the development of medication and treatments for this disease. They have been touted by FORBES magazine as one of the top foundations that designates most of their money toward the mission of finding a cure, and not toward the support of their presiding officers. The foundation is funding the research for several medications that address not only the “mis-folding” issues, but also the mechanism that occurs in the cell that helps to transfer Chloride ions in and out of the cell. This research has ramifications for the treatment of many cancers, Sickle Cell Anemia, MS,and many other diseases. We are hopeful that the cure for Evan’s mutation is close at hand.

Evan, Reed, Marie and I cannot ever express our gratitude to you enough. Thank you for your support.

Teacher Maggie

I do not know how to post other than reply, Jeff , maybe
you can help me there.

Betsy

Jeff