Rare Disease Awareness
There are 7,000 rare diseases affecting 25-30 million Americans, and 90% do not have an FDA approved treatment.
I was born with a rare blood disease called cyclic neutropenia. This disease prevents my body from reproducing white blood cells. When I was six years old I was playing roller hockey in the driveway and scraped my knee. Any other six year old boy’s mother would clean it up, throw some Neosporin & a bandaid on it but for me that was not the case. My scrape got infected. The cut on my knee became extremely swollen and I started to lose feeling in my foot. This little scrape on my knee resulted in me using crutches for four months because I was not able to produce the white blood cells to rush to this area to allow me to heal. I would get intensely sick every week because of my rare blood disorder. I was the only patient at CHOP with this disease then and for years no one had a clue what to do. It wasn’t until I met with Dr. Susan Travis Pediatric Hematologist who would eventually change my life! She continuously gave me reassurance throughout the years that she would find a medicine to give me a fighting chance at living the life I dreamed of and when I turned eight years old she did exactly that! She found a medication that cancer patients used while going through chemo called Neupogen. During chemo they have to kill off all the cells to ensure that they kill the cancerous ones. After that they need to build the patients white blood cell count back up. That is what this medication is for: to reproduce white blood cells in the body. This was the sole purpose of this medication until Dr. Travis introduced it to my family and I. Her resiliency to fight and find a medication for me is something I will never be able to repay. Little did we know then that this would be the medication that would change my life! Thanks to Dr. Susan Travis I was able to live a far different life than the one I was set up for. I am extremely grateful for Doctors out there like my Dr. Travis that have been able to change the outcome of patients with rare diseases. All I can try to do now is pay it forward to those patients and families that are still fighting their own battles to find a medication that will work for them. The purpose of this message is to make people aware that there are more diseases than people will ever know and most of them without an FDA approved treatment. The more well known diseases that affect the masses have a much greater chance of finding a medication to help them but the disease like mine that affect 1 in 20 million people are not as likely to have people all over the world searching for a cure or simply something that will give them a fighting chance. Because of this I’d like raise money to donate to The National Organization for Rare Diseases (NORD) to again help those individuals and their families earn a fighting chance like the one Dr. Travis found for me. If you see the value in making a positive affect on the lives of people you do not know and will never meet. You may not need them but they do need you to help give them a chance of a lifetime. They will not know your name or meet you either but they will thank god for people like you willing to donate to changing their lives.
