Marjolijn Mertz via Crowdrise
November 03, 2012
EVENT DATE: Nov 06, 2013
UPDATE 2 November 13
Dear friends, family, supporters and sponsors,
Exactly one year ago, I was getting ready to take the Sunday morning 8am ferry to Staten Island. Not to run the marathon, but to support the people of Staten Island recovering from the aftermath of hurricane Sandy. Although I was very disappointed about the (very last minute) cancelation of the marathon, it was the right decision to cancel and to direct all resources on helping the victims of the storm (Yes, I am throwing a side eye to you Mr. Bloomberg).
When I returned from New York, I was done with the running, at least for a couple of months...of course, I did not forget that I owe you, as my sponsors and supporters, a completed marathon.
Well, here I am in NYC again...setting my alarm (actually 4, because I don’t want to miss the boat, and yes I know daylight savings ends tonight), trying to get some sleep because this year it is really going to happen!
Sunday the 3rd of November, I will appear at the start of the NYC marathon with number 49164 and I am gonna (fingers crossed) finish to fulfill the promise I made 5 years ago!
As most of you know, running was never my favorite pastime and last year’s commitment to training was because of my promise to Pim. This year, it’s different as I would go out for a run when visiting friends; it is a great way of sightseeing. And after moving to the Cote d’Azur, I started to look forward to my Sunday evening long runs, because, well it is the Cote d’Azur.
So while last year, I was running for Runs for our Sons (Thank you for your donations, they’ve had great success in pushing for clinical trials with very promising results, http://www.parentprojectmd.org). This year, I was also running for me. Running makes me see things in a different perspective and I can see more than I would by just taking auto or public transport. Also I am fit, healthy and happy and now I dare to say it out loud, I LOVE RUNNING!!! (Yes, I am one those people now)
But let's not forget who got me running in the first place, my cousin Pim. There are many people who are not able to go outside and explore new city and enjoy the pretty views. Running for yourself is very rewarding but running for or with someone else makes it all the better! Contact the run for our sons http://www.parentprojectmd.org/ if you want to help or support.
I want to thank everyone who supported me these past years in this adventure, and I really, really hope, I can ticks this marathon thing of my list and finally drink that victory Bacardi Cola, that one is really for you, Pim!
Why run for THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC ? That’s an easy one, because of my cousin Pim!
In 2008, Pim wrote me an email saying he won’t be leaving his specialized bed anymore. He has always been moving around the village in his adapted wheelchair but it was getting too difficult to get in and out of his wheelchair. This was a big setback, not being able to move around freely, to totally depend on others to enjoy some sunshine. It was very difficult for him to accept that he had to give up a lot of his freedom.
When I told him about my plan to run the marathon and fundraise for the Run for our Sons team, he got very enthusiast! We formed a team: Mayo runs for Pim. He would be the brains behind our operation and I would be the muscles
Unfortunately, I did not get in the marathon that year and first had to go through the NYRR 9+1 volunteer program. During that time, Pim was motivating me, he kept track of my training times and modest results. Meanwhile, we were thinking about how to raise money for the Parent Project Muscular Dystrophy foundation. It felt good to work together. Even more so, because we lived an ocean apart and this brought us closer together. We knew when we started this marathon adventure that it would be too late for Pim and that all the money in the world would never make him run again.
Pim passed away in 2009; 2 days after his 38th birthday.
He is my hero. As long as I can remember (he was 6 years older than me), he has been in a wheelchair and every time I saw him, he lost more and more of his muscle power. Nevertheless, he always found a way to be as independent as possible with new technologies. My parents always told me that Duchenne is degenerative disease and Pim was not expected to live past his 20s. (for more info about duchenne : http://www.parentprojectmd.org/site/PageServer?pagename=Learn_about_Duchenne)
Well, he celebrated his 38th birthday with a big family reunion orchestrated by mr Pim himself. A miracle, made possible by his determination and his ability to make the most out of life as possible, this supported by medical and scientific technologies. He lived in a village in the Netherlands called Ons Dorp (translated as Our Village), which is a community for people with a severe handicap offering an alternative for a nursing home. He had his own apartment, fully adapted (he opens doors, answers telephones, opens/closes curtains, all with the touch of his lip on a specialized computer screen). I am very impressed how he was able to be this independent while not being able to move a finger! He had a video renting store in this village and was able to raise enough money to make his dream come true: Going to Disneyland in the US! He arranged a row of seats on a plane and together with his two favorite nurses, he spend a great week in Florida, visiting Disney and Seaworld. He rented a big van and toured around. Pretty impressive for someone who needs 24/7 breathing support.
His motto: make your dreams come true and to enjoy everything at the fullest. You never know when you cannot do it anymore!
Now it is 2012, Pim is gone but I made a promise and this year I hope I can fulfill it. I am gonna run for Pim. Via this page you can make a contribution to help find a cure for Duchenne. 100% will be donated to the THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC. Check out their website (http://www.parentprojectmd.org) for how your money will be used in fighting this devastating disease. Any donation is appreciated, but most important for me is that Pim lives on in our memory and also through his treasured social network sites. In his final year while he was bedridden he could only move his lips as the rest of his muscles had degenerated, but thank god for the internet, he could still keep in contact with people on his social network sites and yell at me for not training hard enough.
So here I go Pim, this one is for you!
27 May 1971 - 29 May 2009
Here is a link to his blog: (in Dutch)