A Journey of Courage

hospital-08When people think of MS, they do not think of a six year old girl. Kids having MS is quite rare, I was one of the first children in the US to be diagnosed with this disease. The first year it seemed I grew up in hospitals. At times spending weeks upon weeks in the hospital, being treated for just about everything and getting poked way too many times each day. I was only six, it was awful. I had very little contact with kids my own age. I missed school and I felt very isolated.

When I was 7, I was diagnosed with MS (Multiple Sclerosis, a chronic disease that attacks the central nervous system). There were not a lot of treatment options, other than steroids for kids at the time. Many hospitals were not equipped to treat kids with MS and one refused to see me because they believed that children did not get MS. It was a frustrating time for my parents and me.

 

rmh-7-08Things changed when we were referred to the Pediatric Multiple Sclerosis Center at Women & Children’s Hospital (of Buffalo). At the time, we lived in Almont, Michigan, 5 hours away. I was very scared about everything. I was worried about what was happening to me, my mom and I had to go to a new city. It was a very scary time for all of us. My parents were and are my rock; they are always there for me.

rmh-oct-07There was a shining light in all of this and it was over the front door of the Buffalo Ronald McDonald House. I felt a sense of relief, knowing there were people inside who could help us and make us so much more comfortable than life in a hospital. They made us feel at home, helped us learn about the area – our home away from home.

There are anchors in my life. When I have to come back to Buffalo for tests like today, the RMH is there for me. It’s comfort, security, warmth and welcoming. It is our base that provides the security to help me and my parents through the trials that my MS brings.

MS brings many challenges. I have been paralyzed on one side, I have not been able to talk, I have had side effects from some of the medications I needed and I have been very, very sick. Growing up, when other kids went on field trips, every 90 days we returned to Buffalo for tests. I missed my childhood. The tests were bad, but each of my returns to the Ronald McDonald House was not. I actually looked forward to coming to the House.

rmh-4-09At the House I could be a kid. I could play with other kids. I got to be normal. When you have MS being a normal kid for even a short time is an amazing thing. The House provided us tickets to the Bison games, the Zoo and the movies. I was normal. The Ronald McDonald House was always there for me and my parents and is still here today as we return for yet another round of tests. The Ronald McDonald House will always be my home away from home.

So does “Never walk again” include bridge walking!!!
So does “Never walk again” include bridge walking!!!

I want to be clear about something, MS is what I have, it is not who I am. I hate being told I can’t do something. “I can’t go back to sports”; “I can’t ever walk again”; or “I can’t go back to school”. That just made me work all the harder.

And look at me now. I am 16 and I can do things that other “normal” kids do and I can do some things “normal” kids can’t and I can do them even better.

I am an artist and I am color-blind. My art is what I am the most proud of. I work around my disabilities, using a darker color scheme that makes my art pop. My favorite is working with watercolors.

img_6818Having a disability makes me want to work harder and be the best that I can be. I am enthusiastic about everything. My parents say that I face each struggle with determination.

Did I mention I am now on the Cheer Team? Looking at my life, my advice to anyone facing struggle is ‘Never give up, anything is possible if you push yourself’.

– Claire Flaherty