Catch the Wave: 3rd Annual Detroit Hydrocephalus WALK (Part I)

Note From Peg:
The following post, by Jennifer Bechard (available at, 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


3rd Annual Detroit Hydrocephalus WALK

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, 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.

Related Links

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.

Social Media for Good: Jennifer Bechard on the Detroit Hydrocephalus WALK

Jennifer Bechard

From Peg:

The following post is by guest blogger, Jennifer Bechard (available at, whom I met on Twitter as @Jenn1423. She is Co-Chair of the Detroit Hydrocephalus Walk  and also suffers from hydrocephalus. Through this post, she hopes to raise awareness and funds for this little known condition, which significantly impacts the quality of life, of over one million Americans alone. I am very grateful to Jennifer for helping me to kick-off this Live with Abundance series, which aims to highlight the giving and positive attitude, which Jennifer represents to me, and obviously to so many others.

And now Jennifer’s story, in her own words…

What is Hydrocephalus?

Most people have never heard of this condition, let alone have to answer this question. Although hydrocephalus is not the typical household word, it is not uncommon. Hydrocephalus, commonly referred to as “water on the brain,” is a lifelong chronic neurological condition, characterized by an increased volume of cerebral spinal fluid (CSF), within the spaces inside the brain. Hydrocephalus affects over one million Americans from newborns to seniors and at present, there is no cure.

The most common treatment for hydrocephalus, and the most common procedure performed by pediatric neurosurgeons in the U.S., is surgical implantation of a device called a shunt. A shunt is a flexible tube and valve system, draining CSF from the brain to another part of the body. Oftentimes, repeated neurosurgical operations are necessary to treat hydrocephalus. Fifty percent of shunted individuals require a revising operation within two years. An estimated 40,000-shunt operations are performed each year in this country, as standard treatment. This is 1 every 13 minutes. Due to the lack of advancements in these treatment methods, many people with hydrocephalus are unable to lead full and productive lives.

Raising Awareness and Funds for a Better Way of Life

Jennifer Bechard _treatmentHydrocephalus is not discussed nearly enough. We need to be heard; our stories need to be told. The lives affected by hydrocephalus need to know there is hope for a brighter future and support is available! Awareness is vital and raising funds for research is crucial. There needs to be a better way of life for those suffering. The management of recurrent shunt malfunctions remains a serious problem for all too many shunted patients. I know this because at the age of 11, I was diagnosed with Communicating Hydrocephalus.

I have undergone 87 surgeries to correct my shunt, over 60 of them, in just the past 3 years alone. My life has been put on hold due to several shunt complications. My senior year of high school, my health declined tremendously, my life was changing, and I needed to adjust very quickly. Thousands of lives have been saved through shunt technology, but the overall design of shunt valves has changed little through the past 50 years. There is much more research that needs to be done to improve shunt technology, therefore improving the quality of life.

I can honestly say that I do not know what it feels like to live a day without a headache or what it means to be pain free. But I am not alone in this and that is exactly what inspires me to help find a cure. I want to share my experience and show people that with a little bit of faith and determination, you can overcome any obstacle you are faced with.

Detroit Hydrocephalus WALK

Jenn and Denise BechardIn 2007, my mom started the First Annual Detroit Hydrocephalus WALK. We are hoping that each year the walk will continue to grow and become a large statewide event. By the year 2010, the Hydrocephalus Association is hoping to have events in each state. This year, we are hosting the Third Annual Detroit Hydrocephalus WALK-WHEEL-RUN And Family Fun Day, at Livonia’s Rotary Park, located at 32300 6 mile, Livonia, MI 48152, on Sunday, August 2, 2009. Registration begins at 8:30 a.m. at Rotary Pavilions 1 and 2. The 3-mile walk is scheduled to start at 9:30 a.m.

Social Media for Social Good

Throughout some of my long hospital stays, the Internet became my outlet and source of finding information on Hydrocephalus. This past year, I began searching for ways to spread awareness of Hydrocephalus. What better way than forms of social media? Facebook, Twitter, blogging, and emailing are just a few of the forms of social media I have personally used to educate myself, spread awareness, network, and raise funds for the Hydrocephalus Association and the Detroit Hydrocephalus Walk. It is amazing how many people and networking contacts can be made in just one day through the Internet sites. In my opinion, it is the most productive and efficient way to reach people in today’s fast paced life style. Our WALK is growing quickly and word about the Hydrocephalus Association is spreading all over the Internet.

Detroit Hydrocephalus WALK_AwarenessOur 2007 Walk was planned in a two-month time span, due to my condition at the time. There was not much time for planning, so the quickest way for us to spread the word was through email. Our attendance for the 2007 Walk was 100 people raising almost $7,000.00. In 2008, I was hospitalized very often, so once again there was not much time for planning, but having learned from the previous year, we were able to take advantage of the Internet more, and as a result had over 200 participants, raising over $18,000.00. This year, we are estimating over 300 participants at the Walk, and I believe this is a result of all the research done and contacts made via the Internet.

Improving Lives Together

2008_Detroit Hydrocephalus WALKThis walk is truly inspirational and has given me the motivation I need to fight through each day. I truly believe I was given this life for a reason, and I am strong enough to live it. I have hydrocephalus; hydrocephalus does not have me. I will not let this illness beat me and I will never let the pain control my life. My goal and lifelong mission is to reach out to others, share my experiences, give support, and restore hope. I am more determined now than ever to raise awareness, funds for research, and bring those affected together. With the help of the Hydrocephalus Association, we will take steps towards improving lives.

Please Help

Please help The Detroit Hydrocephalus WALK reach our fundraising goal. Pass this onto family, friends, & co-workers.

If you would like to attend the walk & would like more information, e-mail me at or Denise Bechard at

For more information on Hydrocephalus and the Hydrocephalus Association please visit: Also, the Hydrocephalus Association made the recommendation list for the @Top10Causes on Twitter. Voting goes on until the 30th. Currently we are in first by about .5 The link is:

Thank you for your time and generosity.

Remember saving lives isn’t enough; we need to attend to the quality of life!

Post and Pitures Provided by Jennifer Bechard, CO-Chair Detroit Hydrocephalus WALK

Related Links

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.