Overcoming obstacles for Jordan

You may be aware, or heard through the grape-vine, that I am a rather active person and enjoy many kinds of exercises. I am now taking my workouts to another level: I have signed up for an obstacle race:  CMC (Civilian Military Combine) at Fort Hamilton in Brooklyn, New York on Saturday 10th September 2016.

It will be quite a challenge for me, and to make this even more worthwhile I am raising money for Duchenne Muscular Dystrophy Research charity.



This is a charity close to my heart; the son of my dear London-colleague Terrie Bentley was diagnosed at the age of 5, he is now 21 years old. And although a breakthrough for a cure for Duchenne Muscular Dystrophy (DMD) is rather unlikely any time soon I believe that funding for further research is a good thing.

Duchenne Muscular Dystrophy (DMD) is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between the ages of 3 to 5. The disease primarily affects boys, but in rare cases it can affect girls. Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal muscles in the arms, legs and trunk. By the early teens, the heart and respiratory muscles also are affected.


I have been aware from a very young age how lucky I am to be so healthy and able-bodied, my younger brother has a form of Spastic Diplegia, caused by a complicated pregnancy and birth. I am very grateful that I can be as active as I wish to be when others are less fortunate than that. (yes, I do have little niggles here and there but they are nothing to write home about.)



About the race:

First up is the AMRAP PIT  (AMRAP = As Many Repetitions As Possible). My poison of choice for the PIT is the Kettle Bell (KB) division – 35lb/16kg KB: 6 KB swings (overhead/American style), 7 weighted step-ups to a 20’’/51cm box, 8 goblet (KB) lunges. Repeating this series of 3 movements over and over for 5 minutes.

This is followed by a 5+ mile obstacle course  race featuring over 25 military grade obstacles



My goal is to simply finish the whole course in one piece. The beautiful thing about participating in such an event for the first time: Any result will be my Personal Best (even if it may take me 24 hours to finish). This race and the training for it certainly is no walk in the park.

Please support the cause and donate generously, but even as little as $1 will be appreciated.

Let me know if you have any questions or wish to join me, there is still time to register and train.



Please take a moment to read Terrie's story:
"Hi my name is Terrie and my son, Jordan, has Duchenne Muscular Dystrophy (DMD). Jordan was diagnosed just before his 5th birthday, a day none of us will ever forget.

After diagnosis, we spent a good two weeks or so just moping about, crying, feeling sorry for ourselves and going through what felt like a grieving process, even though at this stage we hadn’t actually lost our son. The doctors were quite blunt when telling us the diagnosis, informing us our son would be in a wheelchair by the age of 11 and quite possibly dead by the age of 14.

One day something inside made me realise that if we were going to get through this as a family and help Jordan be as strong as possible we needed to sort ourselves out, and be strong for our son.

After Jordan was diagnosed, and we got our strength back, we encouraged Jordan to push himself in everything in life. We brought him up to appreciate that there is always someone else out there much worse than himself. Jordan managed to stay out of a wheelchair full time until he was 13, almost 14. In fact the only reason he was this age was down to high school. Having lessons in a number of different classrooms and moving around the school for each one meant him using the wheelchair to get to each lesson on time. This led to the muscles in his legs seizing up and eventually he needed the wheelchair full time. Jordan got through high school, gaining 8 CGSE’s and doing a year at College studying ICT.

Jordan is now 21 years old. Mentally he is absolutely fine. Physically he is not good at all. He is now bed bound, unable to do anything for himself. We wash, dry, dress and undress him. We hoist him to the toilet, feed him and give him his drink through a straw. Jordan suffers from bed sores, and his body is badly contorted, he weighs less than 30kg/66lbs. Jordan’s life now is spent in bed 24/7 and he watches DVD’s or Netflix throughout the day, every day.

I feel I am extremely fortunate in that I have an amazing family who do their upmost to help us with Jordan. My eldest daughter, Charlie, is his main carer. This was her idea and she is a true angel in what she does for her brother, this also enables me and my husband to work full time and to continue to pay the bills."

Donations

  • Anonymous 
    • $20 
    • 44 mos
  • Jaclyn Terran 
    • $25 
    • 45 mos
  • Noam Tamir 
    • $50 
    • 45 mos
  • Chiara Gorodesky 
    • $20 
    • 45 mos
  • John Murillo 
    • $20 
    • 45 mos
See all

Organizer

Silke Haasemann 
Organizer
New York, NY
DUCHENNE MUSCULAR DYSTROPHY RESEARCH FUND 
Registered nonprofit
Donations are 100% tax deductible.
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