I consider my self pretty fortunate. I was born healthy and raised in a very close and loving family by phenomenal parents with 4 fun and supportive siblings. I have found success in my career and in raising my own family. Life couldn't get better.....
As a Physical Therapist, I naturally noticed that my first born was not achieving the developmental milestones such as difficulty climbing stairs at age 2 or getting up from the floor without using a prop. I just knew, but never wanted to be wrong so bad. Devastation is an understatement when I describe how I felt when my son Zack's, diagnosis of Duchenne Muscular Dystrophy was confirmed. My perfect little boy was handed a death sentence. At the time, his estimated mortality was age 16 with wheelchair sentence by age 9. I grew to dread his birthdays.
Zack did get his first wheelchair at age 9, but was happy to do so, since walking 'started to hurt'. Frankly, he doesn't even remember walking other than that he felt self conscious because he was clumbsy. He has only once told me that life is unfair. Then he pulled it together and asked me to wipe his tears. Zack's courage, his optimism, and his inner strength inspire me to accept challenges, take risks and learn not to sweat the small stuff in this all too short of a life.
Now, 20 years old, still breathing on his own, and in college studying video game design, he continues to inspire me every day. He is brilliantly creative, more knowledgeable about cars than Jay Leno, and is a master with computers. Vital research has taught us to treat young men like Zack preventatively. Cardiac preserving medications, regular pulmonary checks and use of certain equipment has helped extend their average life expectancy.
I stil consider myself fortunate. I am fortunate that God gave me Zack. I have become passionate about raising awareness and I am fortunate to be in a community where my fund raising efforts have always been so well received and supported. Zack's Dad and I established the Zack Heger Foundation, http://www.zackhegerfoundation.org, through which we have been able to lend support to PPMD and other research based organizations in Boston. We plan to continue supporting research until this really mean disease is abolished. I never want to read another story like mine.
I am participating in the Run For Our Sons at the Walt Disney World Marathon Weekend January 11-13, 2013 for the second year. I plan to take on the Goofey Challenge which involves running the half marathon on Saturday, followed by the full marathon on Sunday. Yes, 40 miles in less than 24 hours. Yikes. I will be running as part of a team of 17 aptly named Team Z-Man. Zack plans to join and cheer us on. Our team consists of my colleagues, friends and family. I will proudly suffer and shed blood, sweat and tears with this amazing group. They are my heroes.
The funds raised will go towards Duchenne muscular dystrophy research.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). At least 35% of the cases are random, as in mine. Meaning....anyone can have a boy with DMD.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. . Young men with Duchenne typically live into their late twenties.
Please support PPMD through Run For Our Sons.
Thank you for reading my story.
Margie Lamir Heger, PT
Director of PT Dedham Health & Athletic Complex
I am thrilled to announce that this will be my third year as part of Team Z-man, running and raising funds for the Zack Heger Foundation. I am running in the Walt Disney World Marathon Weekend for many reasons this year.
First, I am looking forward to the challenge of running in the multi day races and taking my running to a new level. I am thrilled to be running the 5K with both of my boys this year. Aden, age 12, and Trevor, age 8, will train for the run this year in support of Zack and the other boys with DMD.
Second, I am running to celebrate Zack. I am inspired by Zack and the positive attitude he keeps. He has a smile every time I see him. I feel like the research is making an impact and so very close to finding a treatment that will affect the outcome of this disease. There has been much promising research over the past year and a few local bio-tech companies have been leading the way.
Lastly, I’ll be running with the memory of my Dad. I was supposed to run in the Disneyland ½ Marathon this summer, but that was not meant to be. My dad passed on the morning of the run and I was lucky to be at his bed side. Now, I will be running this race with him by my side, I’m sure of it.
So now you see, I had to run this year for so many reasons. I am hoping that you will support my run for all the same worthy causes. I could not stop running and raising funds when we are so close to a potential treatment. I am hoping that you will support the Zack Heger Foundation with your generous donation. Thank you! Sincerely, Stephanie Schwartz
This will be my second time running to raise funds for the Zack Heger Foundation for Muscular Dystrophy. Last year, I ran my first, and only marathon to date. It was a success as our team was able to raise funds and awareness for Duchenne Muscular Dystrophy. This year, I am stepping up my game even more! Not only will I be traveling to the Walt Disney World Marathon Weekend to run the Marathon again, but I will be adding in a 5K and a 10K (and if my legs hold up, a ½ marathon as well)!! That is a total of 48.6 miles I will be running in celebration of Zack. I am excited to join the team once again on this ‘Run for Our Sons’.
I have known Zack for over 10 years and seen him grow into a great man. I share a love for cars and new technology with Zak. He is 21 years old now and in a wheelchair, but continues to inspire others with his positive outlook. If you get the privilege to meet Zack, you can’t help but love him and his passion for life.
His family’s fight for a cure and Zack’s ability to face the daily challenges of living with DMD is truly inspiring. I have been inspired to run and raise money for a very worthy cause. Because of generous donations in the name of research and the increasing awareness of this devastating disease, new breakthroughs in medication and treatment continue to develop that help to extend these boys lives! We need to keep trying until there is a cure. I believe we can help Zack and other boys like him
With your generosity and my successful completion of the marathon (fingers crossed!), we will end Duchenne. In anticipation of your support, I thank you for helping Zack and other boys like him.
This is my third year as part of Team Z-Man and I couldn't be more excited. The atmosphere in Disney last year was amazing with so many motivated people with the goal of helping others less fortunate then themselves. It was an honor to be in their presence while also being a voice to tell Zack's story. The experience is something I will never forget and has made me a better person.
Training for these races has challenged me physically, emotionally, and put my life into a clearer perspective. Along the way I've meet inspiring people, ran through beautiful nature landscapes, felt great highs, and pushed through frustrating lows. Unfortunately not everyone has the opportunity to experience these feelings and that makes it all the more special to me. This is why I chose to run for Zack. I have known Zack for several years and we have grown to be good friends. The struggles he has overcome are incredible and he continues to excel everyday. We have several strong members of Team Z-Man but none more impressive than Zack. As evident by everyone's profile, Zack has connected with all of us and motivated each in a unique, special way.
This motivation has spread with our team more than doubling in size from last year and countless more showing their support. Not only will I be running with such great friends, but I will also be alongside my fiance Jen for her first half marathon as part of Team Z-Man. Last year was a huge success in raising awareness for Duchenne's Muscular Dsytrophy and this year will be even more productive. I again ask for your support in helping our cause and raising money for the Zack Heger Foundation. I truly believe the goal in life is to make a postive difference for someone else and I hope my excitement and passion inspires you to do the same.
Bobby & Jen
Aden and Trevor will be running the Family 5K in Walt Disney World on January 8th, 2014 to raise funds for the Zack Heger Foundation for Muscular Dystrophy.
Last year, Aden ran the 5K race and had a lot of fun, but there were so many positive aspects besides just running. He was able to do a public service announcement on the local cable channel to raise awareness of DMD. He gave up his video game time to run and fundraise and he made friends with a child in our local community with this devastating disease.
When his little brother saw the family training, he asked if he could run this year, too. Trevor is excited to run in Disney and has already started his training runs!
Please support Aden and Trevor as they run to help make a difference in the lives of these boys affected by DMD.
We ask your support to make a difference and are grateful for ANY contribution.