Hi, my name is Lindy and I’m a patient partner for this year’s Genzyme Running for Rare Disease Team. Lisa Valaika is my running partner.
I’d like to share with you what it’s like living with a rare disease. I was going to write this yesterday but I suffered a seizure and that took me out of commission for the rest of the day. I never know when a seizure is going to hit. I also don’t know how it will end, or what I will be like when it does. You see, I’m actually living on borrowed time. I’m 34 and wasn’t supposed to live past my twenties.
I have the juvenile form of Metachromatic Leukodystrophy: MLD for short. Everyone, including me, thought I was a normal child. At around the age of 8, I started having social problems and problems following through with anything that required a series of steps. My parents thought I was being defiant or that I had a brain tumor; but I really didn’t know what was happening to me. I explained it once “like being on a merry-go-round and not being able to get off”. I was very smart and strong willed so I would make-up good excuses for my behavior.
When I finally had an answer for what was happening to me, it wasn’t very encouraging. My disease is progressive and terminal. I used to write and illustrate stories, talk and dance. Today I can’t do a whole lot for myself. I need help with everything and I spend my days in a wheelchair although I still can do stairs if I have lots of help. I’m a fighter and as I said, I’m stubborn. I’m not letting the doctors’ prediction get me down! I communicate through my eyes and my smile. I live with the knowledge in the back of my head, that any day could be my last, one big seizure and it could all be over but until then I want to be live life, be happy and educate people about my disease. Today, there are clinical trials happening in Europe and they are looking good if the disease is caught early enough. I know it’s too late for any treatment to help me, but I’m proud that my parents are fighting for others with my disease. Check out the www.MLDfoundation.org to learn more.
Living with a rare disease is hard. I’ve had so many abilities taken from me but I’m more than my disease and it doesn’t define who I am. I’m so happy to be partnered with Lisa and together we will make a difference!