Note From Peg:
The following post, by Jennifer Bechard (available at Jenn.Bechard@gmail.com), is the first of a two-part series on the Detroit Hydrocephalus WALK. Jenn is Co-Chair of the Detroit Hydrocephalus WALK and also suffers from hydrocephalus. She first guest-blogged here in the June post, Social Media for Good: Jennifer Bechard on the Detroit Hydrocephalus WALK. For more information on Jennifer, see her personal story at Gabriel’s Life, or her own newly launched blog, Just Believe.
For more information on hydrocephalus, see the Hydrocephalus Association. (Please also consider voting for the Hydrocephalus Association, at Intel’s Vote for a Cause Competition, one vote per day, on Facebook.) Other resources and fundraising sites are located under “Related Links,” at the conclusion of this post.
In her original guest-post, Jenn helped kick off this Live with Abundance series, which focuses on using social media for good. In that first post, Jennifer’s goal was to raise awareness and funds for hydrocephalus, which significantly impacts the quality of life, of over one million Americans alone. Here, Jennifer describes how 343 people turned out on August 2nd to walk for a cure.
And now, in her own words, the first part of Jennifer’s follow-up on the 3rd Annual Detroit Hydrocephalus WALK…
Impacting Lives Together
On August 2, 2009, 343 people gathered at Rotary Park in Livonia, MI. Each year, we come together as one to raise hydrocephalus awareness and funds for research. I am the CO-Chair of the Detroit Hydrocephalus WALK in MI, and I have had the privilege to take part in this powerful movement. I have watched our WALK grow into an inspirational event, impacting lives throughout my community.
No Cure, Great Uncertainty
There is no cure for the neurological condition known as hydrocephalus, and the only treatment is brain surgery. Hydrocephalus is a lifelong battle that can be physically and emotionally draining on a person and loved ones. From my personal experience with hydrocephalus, and my countless days spent in the hospital, I have been able to witness the daily struggles others have to endure. A life with hydrocephalus means your future is uncertain, and many live in constant fear of what is to come. Will I make it to my next birthday? Can I overcome the pain? These are just a few questions we ask ourselves.
Sunday August 2, 2009 ~ A Common Goal
On Sunday August 2, 2009, fears turned into a glimmer of hope for a brighter future. There is nothing better in life than seeing that smile appear upon a child’s face when they realize there are others like them–that they are not alone. Children, adults, and families felt comforted being able to share their stories with people who truly understood what they were going through.
We had 16 individuals with hydrocephalus at our 3rd Annual Detroit Hydrocephalus WALK. Ages ranged from 1 years old to 60, and conditions were congenital hydrocephalus, all the way to normal pressure hydrocephalus, NPH. No one’s story was the same, but we all had one common goal for this very special day. Our purpose was to educate others, bring awareness to our community, and help raise funds for research.
Making a Difference
On Sunday morning the sun was shining; we couldn’t have asked for a more beautiful day. As I stood on the tennis court looking out to the crowd of people gathered for the opening ceremonies, I couldn’t believe my eyes. We were rallying together, and we were making a difference. On this special day, we put aside any negative aspects of our lives and focused on bettering the lives for the future people affected by hydrocephalus. This inspirational day really puts life into perspective. In that moment, nothing else mattered.
Isaiah and Kadyn: Beating the Odds
There was one specific part of the day that stands out the most to me. I was holding Isaiah Harpster for a picture. Before Isaiah was even born, his parents, Evelyn and David, were told there was a slim chance their son would live a long healthy life. The doctors told Evelyn and David there was no hope or reason to even go through with the pregnancy. But from day one, the Harpsters loved their son and had no doubt in their minds that they were going to have him, no matter what his life expectancy was.
The Harpsters have been a part of the Detroit Hydrocephalus WALK since our first event held in 2007. We have been lucky enough to watch Isaiah grow into a strong, determined boy. As I held Isaiah for a picture, he suddenly began to count, “One, two, three, four”–tears filled my eyes. I couldn’t believe what I was hearing. Was this happening? A boy who wasn’t supposed to live was beating the odds and proving his doctors wrong. Isaiah is living proof that miracles happen every day. He is showing all of us that no matter what we are battling in life, we can “beat the odds,” with our loved ones surrounding us.
Another child who captured my heart at the WALK was baby Kadyn. Kadyn was born with severe congenital hydrocephalus, two holes in his heart, seizure disorder, and a cyst on his left kidney. Kadyn’s mother, Sara Inman, found out about Kadyn’s condition at 22 weeks pregnant. Rather than giving up, Sara made a decision to not give up and fight for her soon to be son. Sara has passed on her courage to Kadyn. At not even 2 years of age, Kadyn has already undergone 11 surgeries. When doctors wanted to give up, Kadyn stuck it out. He is not willing to give into hydrocephalus. Sara says, “If it wasn’t for Kadyn, she would have never made it this far.”
Deserving More Than Quick Fix Treatments
Children like these two boys are perfect examples as to why we should not settle for a treatment that is just a “quick fix.” This is not good enough; no one should ever have to undergo multiple surgical operations and daily chronic pain. We deserve a better life.
When my mother, Denise Bechard (available at DJBhydrowalkMI@gmail.com), started the 1st Annual Detroit Hydrocephalus WALK, our main goal was to educate others and raise awareness. (For a glimpse of inspirational past walks, see these videos from 2008 and 2007). But this WALK has grown into something much deeper. We want to support others.
I am sharing my journey with hydrocephalus to show others that we cannot let hydrocephalus, or the lifelong pain that comes along with it, beat us, or take over our lives. We can and will defeat hydrocephalus. Along with the Hydrocephalus Association, we will continue to strive to bring this neurological condition to the forefront of public attention. Each step we take on WALK day is bringing us closer to a much-needed cure.
- Catch the Wave: 3rd Annual Detroit Hydrocephalus WALK (Part II)
- Find WALK events in your area
- Detroit Hydro Fan Page
- Codman’s website
Please contact the author Jen Bechard directly, for any rights to republishing this post. Peg Mulligan’s blog is protected by copyright, but I give any appropriate rights back to guest bloggers, for posts they may have authored, but which were hosted at this blog.
Dear Jennifer, Thank you! Thank you so much. You are an
inspiration and role model. I’m on my way to the New Hartford (NY)
Public Library to make meeting arrnagements for weekly
NPH adult support group,
All Things NPH.(also name of blog–a work in progress.)
This is the longest and one of only several I’ve written in
With all good wishes. And to your Mom too.
do you talk on the phone? I have unlimited service….
Thank you for your kind words. You can e-mail me if you would like? I’d love to hear about your NPH support group! Send me a link to your blog as well!
Amazing- as always!