This speech was written by Jonathon Connolly and he read it at the State House for “Rare Disease day”.
Good Afternoon everyone:
On August 7th 1999 I was born a healthy baby boy. 5 days later began the challenge of a lifetime.
I was not officially diagnosed with EB until I was 3 months old. My mom and dad had no idea about the disease… and come to find out that neither did any of the doctors I would be involved with.
I remember going to the doctor’s office and my mom having to educate them all about what she knew about EB. All of the nurses and doctors would come in and look at me and ask us all sorts of questions.
The appointments were long… often turning into teaching sessions rather than getting answers about the disease. My mom put together a folder that had all of my current lab work, treatment plans, and any other important information about me together for the doctors.
Another battle that I remember was my mom on the phone with the insurance companies. At first I didn’t understand why she would hang up the phone crying; but, as I got older, I found out the insurance company would often limit the number of bandages or other medications I needed to keep me comfortable and free from infections. This was not right.
My mom and I appeared at a few dermatology conferences so, medical students could see EB first hand and not just in the text book.
Today, I understand a lot more than I did before, but the one thing that has not changed is how I feel about EB!
I am now lucky to have great doctors that are learning more and more about EB. The place that sends my supplies now works with the insurance company.
There is so much that needs to be done… that is why funding is so important.
I am not the only one that is affected by my condition. My family is also.
Whenever we want to do something, my parents need to decide if it is something that I can do or if there is a potential danger to me.
We always have to make sure that I have enough supplies for a day… and plenty of extra just in case I fall or get bumped in a crowd.
Places that many families look to as a quick get away for me are places of great danger. Simple things like a quick dip in the ocean can give my toes blisters and put lots of sand in my wounds.
We have been asked to leave pools because of my skin and that’s with blisters not even being open. When things like this happen it makes me sad and angry that people don’t understand… or they don’t want to take the time to learn.
Every time we go out and someone asks “what is the matter?” my mom and I try to make it a teaching moment.
There have been times when people have accused my mom of all sorts of things and that hurts, because my Mom and I would not wish this on anyone.
Like most kids, I have hopes and dreams, but I understand that I will never be able to play football, hockey or even wrestle; but with events like today and companies that are working on treatments there may be hope for future generations of butterfly children to be able to fulfill their dreams… and that is one thing that would make me very happy.
There need to be more events like this to raise awareness to all through media coverage and local events being covered.
I hope everyone can take the time to learn and teach!