Birthdays, MH, GW is a Jerry's kid, and MDA

Wednesday, August 12th, 2009

Every August and September I send this message to everyone I know:

I know money is scarce right now, but if you are able to, please support the Muscular Dystrophy Association (MDA.org).

I am a Jerry's kid, and I would not be alive today without the fine people at MDA and Emory.

Every time I visit their clinic, I see the children that are being helped by MDA and I start to cry. These are the bravest of children who are living in unthinkable situations and suffering from horrible muscular diseases. One day, I pray that MDA will find a cure for all of these diseases.

Unfortunately, MDA is the ONLY ONE who is even searching for a cure. You see, all of the big pharmaceutical companies don't do any research on rare diseases. They are all worried about earning a big profit, so they won't use their resources to develop a treatment for such a few number of "customers".

Although I was diagnosed with a myopathy (muscle disease) related to my Malignant Hyperthermia (MH), I still had my childhood. I had my first surgeries on my feet at around age twelve when they had to sever the tendons on my toes to release them from contractures. My disease didn't bother me again until around age 30, but there is still no cure or further treatments after my last round of surgeries.

I have had full careers in retail, medicine, engineering, and corporate management. I even served on a destroyer in the Navy! Many of the kids at MDA are acutely aware of the fact they might not live past their teens. Dying is something that no child should have to think about on a daily basis.

When you know that your number of birthdays is limited, it changes your perspective on time management. You want to appreciate every minute that you are still blessed to be on this earth. But a medical diagnosis is not a requirement, because even a healthy person could get hit by a bus. Every minute is precious! As I always say, "Any day still above ground is a beautiful day!"

Birthdays: Thank you for all of your birthday wishes, but I don't celebrate them like normal people. I celebrate life each and every day [that sounds cheesy, but it is true]

"My life is like a never-ending Ricki Lake Show (younger people - replace Ricki with Jerry Springer)"

I always go into seclusion in a panic room on my birthday. I have been robbed on THREE of my birthdays! Each incident happened from a random person that didn't know me, and they all happened in different cities. Figure the odds on that happening to someone.

Malignant Hyperthermia (MH) - A very rare disease where you are allergic to anesthesia. That means if you are in an accident, the paramedics might kill you if they administer certain chemicals on the way to the hospital. No anesthesia also means you can die by having even minor surgeries. You can only imagine the pain of having surgery without anesthesia. This is one of those genetic diseases that you don't know you have until it kills you. If your family has a history of people dying in surgery or child birth, you may have MH that runs in your family.

Some people have asked about my wheelchair and why it is in some photos but not in others. I am pulling a trick on you like President Roosevelt! I can stand for a few seconds, so they take my chair away just before they take the photograph. In many photos you will find me cheating - I will either be sitting down or I am holding on to something that is next to me. I have some very funny stories, but I will save them for a later blog.

I wish the schools would rotate through all of their students and make each one sit in a wheelchair for a day just to see what it is like...

Thanks to each of you for your kind thoughts and prayers - I love you all!!!

-- Gary Wright II

Return to Blog Index