The Hughes Family: A boy in a box

Saturday, November 13, 2010

A boy in a box

I just had to share these photos because Ben just looks adorable in them. He had more fun in this box then with some of his toys, ha!

I’d like to send out a HUGE thank you to my mom’s side of the family. We are going to spend Christmas in Santa Barbara with them this year and we were a bit nervous having Ben around so many people. So I emailed/called everyone and my grandma, seven aunts and uncles and 20+ cousins were more then happy to get the flu and Tdap (whooping cough) vaccine in time for Christmas! Words cannot express how much Ryan and I appreciate everyone doing this because we know it takes time and effort. There is no better way to support our family and Ben, thank you Donlons!!

2 comments:

Ryan HughesNovember 13, 2010 at 6:39 PM
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Ryan HughesNovember 13, 2010 at 6:40 PM
o back Margaux's post.. It makes decisions like these so easy when others step it up and put Ben's needs first. Thanks again Donlons!! Looking forward to Christmas.
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What is Cystic Fibrosis?

Cystic Fibrosis is a life threatening, inherited disease, that causes mucus to build up and clog some of the organs in the body. Majorly in the lungs and pancreas. When the mucus clogs the lungs it makes breathing very difficult. The thick mucus also causes bacteria/germs to get trapped in the airways, which causes inflammations and infections that damage the lungs. The mucus can also block the digestive tract and pancreas. It stops the enzymes from getting into the intestines. The body needs enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with capsules they take with their meals and snacks to help digest the food and get the proper nutrition.

How do people get CF?

Cystic Fibrosis is a genetic disease. Which means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body’s cells, control cell function by serving as the blueprint for the production of proteins. The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene.one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

What is the life expectancy for people who have CF?

There is no way to accurately predict how long people with cystic fibrosis will live, as many different factors may affect a persons health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases. In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago. Improved treatment and management of Cystic Fibrosis now results in a much longer life expectancy. Since the 1960’s, average life expectancy has risen from 5 up to just over 37 years

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Saturday, November 13, 2010

A boy in a box

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