Okay, well that is just a tad bit misleading, but Hannah’s picture will be running in the Boston Marathon!
For the last few years, Genzyme (the company that makes Cerezyme) has had a team run in the Boston Marathon . Each runner pairs up with a Genzyme patient to help raise money for NORD, the National Organization of Rare Diseases.
We have been paired up with a wonderful woman named Mandy, who is going to have Hannah’s picture on her shirt during her run! How wonderful is that! The rest of their team is also paired with patients with Pompe disease, Niemann Pick B, and Canavan disease (all lysosomal storage diseases).
When I was told that Hannah was one of the patients chosen for this event, my heart just swelled. It may not be as big a deal for them, but it was huge for our family.
Everything I have done over the past 15 months, working with Genzyme, researchers, families, etc., has been this intense personal need to make Hannah’s life purposeful. I know there is a reason that she is here and a reason she is doing so well considering what the alternative could be.
Having her story shared with so many people, creating awareness for this form of Gaucher’s disease (when so many people think that it is treatable like type 1 when it is not), and trying to make a difference and forward progress of research of this disease — this is just a little bit of proof, to me way, that someone is listening.
Because of Hannah, people are becoming more aware of this disease. Because of Hannah, renewed enthusiasm has been shared for kickstarting the process to create more awareness, raise funds, and hopefully, my ultimate goal, find a cure for neuronopathic Gaucher’s disease. To say there is a long way to reach that goal is such a hugely gross understatement, I realize that. But it is better to keep moving forward to try and reach your goal than to sit around and not do anything.
Thank you Mandy, Kathleen, Phillip, and the entire Genzyme Marathon team for taking Hannah and the other kids you will be representing on this fantastic journey with you. Thank you for helping enlighten people with our stories. I hope you are all successful in your run as well as raise a lot of money for NORD with your sponsorships, Online Silent Auction , and the NORD Donations page.