Thursday, April 28, 2011
ASAP Walk and Roll
On June 18, 2011, I am organizing a walk for ASAP. ASAP is a non-profit, 501(c)(3) donor- supported organization founded in 1988 that provides funding for research, support for patients diagnosed with chiari and syringomyelia, yearly conferences, and many other resources for patients, and doctors. After my diagnoses ASAP was the first online resource I went to for help to look for answers in trying to understand my medical condition. Through the forums and medical literature I found a greater understanding of my medical condition than I received even from my doctors. Through ASAP I have attended two of the yearly conferences and met other people that have been diagnosed with chiari and syringomyelia. I have made friendships with other people that have been diagnosed with chiari and syringomyelia that has lasted since the day we met. These are some the reasons why I have chosen to organize a walk and raise funds for ASAP. I know the funds will be put to good use.
The medical conditions chiari and syringomyelia are devastating conditions to be diagnosed with. I have been to the conferences and sat next to people that because of their diagnoses the same diagnose my son and I have received these people cannot turn their heads to look at me. Some have had their complete cervical spine fused to their skull. So their head no longer rotates over their necks. I have sat with a mother from Florida in New York up at The Chiari Institute at Christmas time. Her 7 year old daughter was having brain surgery during Christmas break because it was the only time they could take time away from school and work and have babysitters for the other kids back at home in FL. This mother did not know anyone in NY. I reached out to them on the ASAP forums because I was going to be visiting my in-laws in New York for Christmas so I was able to visit the hospital and bring gifts and treats for the little girl.
With this condition being so misunderstood many patients that are diagnosed have to travel most of the time many states away to be seen by the chiari experts and then have surgery, brain or spine surgery, many states sometimes countries away from home. They then travel home after such a devastating surgery. That is exactly what I did. After my spinal cord surgery, after a week in the hospital it was an 8 hour drive home. I remember stopping at rest stops getting out with my neck collar, walker, and PJ's and getting some of the craziest looks. Then their are those like my 12 year old son Hunter, he has not had surgery yet. Hunter does have many bad days. He misses more days of school than I would like because of his back pain and headaches. Any day could be the day that could be the bad day that does not get better and could end up being the day that leads to surgery. And the surgeries are not a cure. That is something most people do not get. We do not have a cure. Our surgeries we have when our medications are no longer controlling symptoms are no longer keeping them manageable. The surgeries are band-aids.
These are some of the reasons why it is so important for us to have this walk. We need people like you to support us. To walk and roll beside us, if you cannot walk with us on June 18th, 2011, please donate online. Below is the link to our online pages. From the links you can sign up to walk, sponsor a walker, donate, or just read all the information you need to know about the day of the walk. My email address is also listed on the page. Please email me with any questions.
Main Page Summerville Walk & Roll