An Inspiring Teenage Girl Battling A Rare Respiratory Disorder

"Life is like a cup of hot chocolate, sometimes you get burned but it always tastes good."

~Emily Hanna

When you read the quote from 18 year old Emily Hanna, you imagine she might be referring to the "ins and outs" of an average teenager in America. Average is far from the life that Emily shares with the world on her blog, "Up for Air". Emily, a not so typical senior high school student, was born with a rare disorder called Congenital Central Hypoventilation Syndrome. She is only 1 of about 800 people in the world dealing with this condition. It is a very complicated problem that has stumped many of her own doctors over the years. She, unfortunately, has been in and out of hospitals her entire life but she has not let this stop her from being as normal as possible and doing things that many with her disease won't even try.

Normal people breath without even thinking about it. This is called autonomic control of breathing. Our body knows when to breath more or less depending on what is going on inside our body. With Emily's condition, the autonomic control of breathing does not exist. This can be most dangerous while people with this condition sleep as they can actually stop breathing. In severe cases this can also happen while awake.

The amazing thing about Emily is that she has not let her condition limit her activities. In fact, she is a great athlete. She is a Nevada State Champion in track and she plays on a traveling soccer team.

Emily credits one of her pediatric pulmonologists, Dr. Karen Hardy of Children's Hospital Oakland, for helping her through many of her trials. If you talk to Emily, she will tell you that Dr. Hardy has saved her life on numerous occasions. In addition to saving Emily's life, Dr. Karen Hardy works tirelessly to improve the lives of thousands of children who suffer from various respiratory diseases. She specializes in the management and treatment of cystic fibrosis. She often provides pro bono care to some of these patients and has found ways to find funding to pay for others as she serves a large underprivileged community. In talking about Dr. Hardy, Emily says, "You just don't find doctors like her anymore; she is a silent champion for the sick, the poor and the homeless."

Dr. Karen Hardy

Paying for services for children's families that can't afford health care themselves has become more difficult with our recent economic situation. Why does this all matter to Emily?? It matters because Emily has chosen to do something to help Dr. Karen Hardy. She has committed to helping make people aware of an endowment fund that will support Dr. Hardy's fellowship program. She is not just making people aware either but has set a goal for herself to help raise one million dollars for this fund. We thought we would, in turn, help her by letting all of you know about this great endowment fund in hopes that you might want to donate too! To find out more information about this, please visit Emily's website at the link below:

http://web.me.com/staceyhanna/Site/Welcome.html

A family friend of Emily's bought two Annie & Isabel Hospital gowns for Emily and here is what she had to say about having her own hospital gowns:

"I can't remember a time when my year didn't include a hospital stay. Sometimes I only have to stay for a couple of days and other times for a week. The doctors and nurses are wonderful to me and always try to make me feel a little bit normal during my visits. One of the worst things about the hospital are the horrible hospital gowns that I have to wear sometimes. They never cover enough, they are usually old and somewhat see through. Our friend, Carrie Johnson, got me two Annie & Isabel gowns before a planned surgery and I wore them everyday.

I love my Annie & Isabel hospital gowns. I have been in the hospital three times this year alone and because of all the tubes it has been difficult to wear regular P.J.'s. My Annie & Isabel gowns don't look like regular hospital gowns because of the cute fabric but they function really well with IV's and different tubes and they tie so well that I feel covered when walking around. They wear so comfortable that they gave me a little piece of home while trying to recover. One of my favorite things about your gowns is the fabric. There are several different patterns to choose from and each of my gowns have a lady bug on the sleeve. My favorite color is the pink with black polka dots. I would recommend these gowns to anyone but especially teenagers because they are comfortable and cute!"

Emily...your story has really touched us. We hope your Annie & Isabel gowns will stay tucked away in your closet, but when you do have to visit the hospital..we are so happy you are tackling those admissions with style and comfort and of course your amazing attitude in life. Try not to burn your mouth too many times on the "hot chocolate" of life! Your story is sure to inspire many as it certainly has inspired us!!