Putting my life on the line to improve another’s – Please RT and donate

February 9th, 2010
by Christopher Kusek (PKGuild)

This is actually one of the most difficult blog posts I’ve had to write!   I guess to make it easy, I best start off with a little story.

This last year in September I was given an opportunity to partake in something bigger than me – I applied myself and earned my place as part of a Team! What is this teams objective you might ask?   It was to partake in running the 2010 Boston Marathon in order to raise money for the Michael Carter Lisnow Respite Center.    As part of this initiative I signed on to raise $5000 to help children with disabilities.    Of course, don’t let me be the only one to tell you about it, here is Michael’s story.

Michael was born in 1986, sixteen weeks premature, weighing just over a pound. He was so small his father’s wedding ring could slide up his arm. His chance for survival was only ten percent, yet he lived for ten years. The first three months we spent in neonatal intensive care. It was a roller coaster ride and our family entered a new world. A world with its own language and culture. Many think that the experience of having a child with disabilities either breaks you or makes you stronger. The truth is it does a little of both. When we learned Michael had extensive brain damage and would be blind we wondered how our family would survive. The early years became a series of hopes dashed by reality.  He would not walk, he would never talk, he would not see, he would eat through a tube and he would always have seizures. The world was turned upside down. At one year Michael still weighed less than ten pounds. Life was fragile and lonely. Slowly Michael’s personality began to grow. It was Michael’s laugh, his joy and his determination that became the strength of our family. He was the joy of our lives. He thrived in our local public school and had a wealth of friends. He loved with all his heart. Things became difficult when Michael would get sick again. Throughout his ten years Michael had seven stomach surgeries. Children’s hospital became a second home.

When Michael was five I met Mary, a special education teacher. We shared a vision for creating a place that would provide emotional and physical support for families with children with disabilities. Many people think the Center was created in Michael’s memory but it was actually conceived when Michael was eight and had been healthy for over a year. Our dream became a reality when we were given a parcel of land in Hopkinton, Massachusetts. Two years later, as the house was being framed, Michael went into the hospital for what we thought would be an easy surgery. This was not to be, the surgery was complicated and Michael ended up in the hospital for a month. Michael died nine months later, at home, from complications of the surgery.  During that time Mary and I had lost our ability to dream, Michael’s care was all consuming. We were blessed to have two local businessmen continue building, knowing that someday our hearts would return to the mission. We received $158,000 in Michael’s memory and the house was completed. Slowly we came back and one year later the Respite Center opened, providing respite care for four families. Eight years later over 130 families use the Respite Center and we offer seven different respite programs. Our ability to dream and our passion for helping families with disabilities returned. Many see the house as Michael’s legacy but his true legacy is the wisdom he gave us and the ability to know how to help when others can’t. Michael would have turned eighteen this year, his class graduated from high school in June. As each year passes the sweetness of Michael’s memories grow and the lessons he taught become clearer.

As the Respite Center enters its eighth year, Mary and I thank you for the support you have given to us throughout the years. Your generosity has helped many families. Michael’s story reflects many of the same things experienced by our families. We ask that you take a moment to read some of the stories from families you have touched.

With love and appreciation,


Michael’s Mom

Now, I know a number of you supported me when I shaved my head to raise awareness and money for children with cancer.  

The shaving 

This cause is going to be even more challenging than simply shaving my head, as I’ve been training since I found out I’d be able to support this cause.  Yes, for those of you who know me – you do know me as not exactly the ‘most athletic’ soul, which is why I further emphasize how much every single dollar counts!   Think about what I’m willing to endure on my own physical body, both through training and on Race-day when I force my body through the act of running 26.2 miles – Just so some others are able to have a better life from our contributions!

Yes, here it is! Seriously.   Every single dollar counts.   If you can give only $1, I’d absolutely love that – and every other dollar you can give is even better!   Don’t wait and think “yea, someone else will give, so my donation won’t matter” – It does matter.  It matters to me, it matters to them.   If you want further incentive (and if it’ll encourage you) I’ll shave my head again on behalf of this cause (You’ll need to let me know if that’s what you’re looking for, though I prefer to do that on behalf of Cancer to show solidarity – But you let me know :))

Supporting me is as simple as clicking on this link or picture

Please help sponsor me on behalf of children with Disabilities

So, don’t wait until it’s too late.   Every day counts, every dollar counts.   I have 2 months of training to go, and I’m far from my target!   So, please help for the children!

Thank you! – Christopher Kusek

Tags: , , , , ,
Posted in Charity, Christopher Kusek, emc | Comments (1)

  • […] As seen in this blog post: Putting my life on the line to improve another’s – Please RT and donate […]

    • Archives