We Ride for More than a Cause, We Ride for Children Like Madeleine
This adventure-seeking idea that Mark and I had to take a somewhere between 2500 and 3000 mile ride out West with just what we could pack on two bikes was exciting at first. We quickly realized it should be about more than just our desire to see new places. We stumbled upon the opportunity to work with Celsius as a sponsor and facilitator of this blog and knew that this opened the door to make this ride about more than just the adventurous Spirit of America but about the generosity and strength of the American spirit as well. There was no question, when given this unique chance to do something special for a cause close to our hearts, that the cause had to be Hydrocephalus. Yes, we ride for adventure…but, more importantly, we ride for Madeleine.
Madeleine is a beautiful young lady who excels in school, loves to read, cook and eat healthy. She is currently preoccupied with choosing which college she wants to attend as she begins her junior year of high school. Madeleine is a very normal teen-ager in every way…except one. She has survived seven brain surgeries since she was a baby. Madeleine has hydrocephalus.
Our family learned that Madeleine suffered from this devastating neurological disorder when my sister was still pregnant with her and her twin brother. She was 15 days old when surgeons inserted her first shunt into her brain cavity to drain the fluid that would otherwise have caused her a slow and agonizing death as the pressure mounted inside her tiny head.
Madeleine was always a sweet child; she never complained. The only times I remember her showing any outward reaction to her ordeals were just prior to another surgery when she would cling to her mother, knowing what was to come. This past June, for the first time, Madeleine attended a Hydrocephalus Association conference in Washington D.C. At this conference, she had the opportunity to meet other children and adults living with hydrocephalus. Realizing that others are fighting the same battle, and meeting them face to face, was life changing for her. Madeleine is not alone.
Through the Spirit of America Ride for Hydrocephalus, Mark and I are proud to introduce you to Madeleine…
Hi, my name is Madeleine Darowiche and I am 17 years old. I am a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed at six months old, while in utero, and I had my first shunt placed at 15 days old. Since then, I have had six revisions. My last revision was six years ago.
After attending the Hydrocephalus Association conference in Washington, D.C., I felt truly inspired. I realized, for the first time, that there are people who know what I have been through. During the conference, hydrocephalus volunteers, advocates, and patients went in groups to Capitol Hill to speak with legislators about the importance of funding for hydrocephalus research and programs. Hydrocephalus programs receive only $3 per person so raising awareness among lawmakers and the public is very important.
Retired astronaut, Mark Kelly, was a keynote speaker at the conference. Commander Kelly’s wife, U.S. Congresswoman, Gabby Giffords, now has a shunt because of the injury she sustained in the 2011 Tucson, Arizona shooting. The strength of Kelly and Giffords is inspiring. Living with hydrocephalus has many challenges. I have difficulties with math and socialization in school. There is always the possibility of a malfunction or infection. Nevertheless, people with hydrocephalus can live completely normal lives. Although it can be challenging to live with hydrocephalus, I am so grateful that I can educate people on this common but little known condition.
More About Hydrocephalus
Mark and I hope you will follow our updates as we set out for Denver on our bikes in a few days. Along our journey, we hope you learn more about hydrocephalus and amazing children and adults like Madeleine.
Follow us on Twitter or other social media channels for updates in the coming weeks and for more information on how you can support the Hydrocephalus Association.