Sir Connor the Spirited Message @ The Magical Moon Foundation

Submitted by Corrine Hess

My son right now is very healthy ---and for that we are blessed -- but we have a friend, Jena, who's only 12 years old who struggles every day to breath. The disease has just taken over her poor little body - she has a feeding tube and port for her daily injections, she is on oxygen 24/7 they have already suggested that she may be looking at a lung transplant and just recently was diagnosed with Cystic Fibrosis related diabetes. People look at Connor and see a healthy boy -- and what is sad is that it's deceiving -- its a progressive disease and with time his body will wear down too -- hopefully not as fast as Jena's (she was hospitalized 4 times this year with 3-4 weeks of antibiotic treatments each time) --thankfully Connor has not yet been hospitalized -- I always say we need a cure for Connor -- but we need one today for Jena.

What is so sad--is there are so many -- too many -- diseases that are preventing children from living normal lives. What saddens me is that there are any children, with cancer, with CF and whatever other horrible diseases are out there...it's just so sad.

Connor is 3 years old -- he is not only smart, curious and very active, but stubborn and strong willed-traits his Dr. thinks will help him fight this disease.

Cystic Fibrosis is a disease that affects over 30,000 children and young adults in the United States alone. This fatal genetic disease affects every part of Connor’s tiny body, but primarily targets his respiratory and digestive systems, however, the liver and kidneys can also be affected.

The body processes salt through cells in our body, however, in a child with Cystic Fibrosis, that system does not work. It causes the channels that would normally transport the salt to clog with thick heavy mucus. When germs and bacteria are introduced to this mucus, cells start to fail. This is especially harmful in the organs, like the lungs, liver and digestive system. The thick mucus sucks the oxygen out of the lungs causing his weakened lungs to suffocate causing permanent damage. Inhaled medicines, anti-inflammatory and mucus regulating drugs help prevent further damage to the lungs.

His digestive system does not work properly and we regulate it by administering digestive enzymes with every meal and snack (that’s over 20 pills a day). The enzymes help him absorb fat and nutrients that we would get from our normal diet, therefore enabling him to gain weight. Connor, although small for his age, 30 pounds and 37 inches tall, has for the first time made the 25% percentile for his age group in weight.

Because of his rigorous medicinal routine and treatments, we have been able to keep Connor relatively healthy. However, the disease is progressive and as Connor grows the disease will progress. Connor will face a lifetime of Doctor's visits, daily medical treatments and frequent hospitalizations.

Current treatments for Cystic Fibrosis have enabled patients to live longer, but there is still NO CURE!

I cannot thank you enough for this thoughtful gesture

Corinne Hess

Submitted To:
The Magical Moon Foundation
P.O. Box 83
Marshfield Hills, MA 02051