As a young mom with a very sick child, I learned that Bobby Jones and my four-year-old son had something in common. They were both diagnosed with syringomyelia (SM) - a word that I couldn’t pronounce and a diagnosis that I didn’t understand. Syringomyelia is a disorder in which a fluid filled cavity forms inside a spinal cord called a syrinx. It is a very painful condition that can be acquired through trauma, or be present at birth. The fluid expands in the cord destroying nerves, causing severe pain, numbness, loss of bowel and bladder control, and paralysis. There is no cure and surgery is generally unsuccessful.
In 1991, my son was in a back brace, losing his ability to walk, vomiting on a daily basis, and having episodes of being unable to breathe. There was very little known about SM and my research at the library offered brief paragraphs with very little information or hope. I did learn that Bobby Jones had been diagnosed with SM in 1946, before the invention of MRI. He would have had a very painful test called a myelogram which involved injecting dye into the spinal cord area, turning him upside down so the dye would circulate and then performing an X-ray to image the spinal region. As his SM progressed, Jones lost his ability to walk and suffered from chronic debilitating pain. Learning about the life of Jones, I knew that this man would have understood my son’s suffering and how difficult it is for loved ones to watch the progression of this terrible disorder.
In the spring of 1995, I decided to call Robert Tyre Jones IV, the grandson of Bobby Jones, to see if the Jones family would help raise money to cure SM. Dr. Jones accepted the invitation to come to a dinner in New York and speak about his grandfather. I learned that Bobby Jones did not complain, but instead, accepted his diagnosis and fate with grace. “As a young man he was able to stand up to just about the best that life can offer, which isn’t easy, and later he stood up with equal grace to just about the worst.” – Herbert Wind
Bobby Jones and my son share other commonalities. They were both champions at an early age. Winning the Grand Slam is one of Bobby’s greatest achievements and my son, now 32 years old is a survivor of two brain surgeries and shunts. He is 6’5’, walks and is getting his doctorate in physics. A Grand Slam in its own right!
Syringomyelia, a disorder that affected Jones and my son, has forever changed my path in life. As the Executive Director of the Chiari & Syringomyelia Foundation, (CSF) I am committed to finding the cure for over 3,000,000 Americans that are diagnosed with Chiari, syringomyelia and related disorders.
CSF works with Major Medical Institutions around the country to educate patients and their families, reaching almost 2,000,000 people world-wide with our online video lecture series. CSF continues to partner with these institutions and the National Institutes of Health on research initiatives and has launched a multi-disease patient registry to unlock answers for CM, SM and related disorders. A registry of this sort is unprecedented- it will allow researchers to study associations that would be impossible to do, if each disease had its own registry.
The annual Bobby Jones Classic for CSF is held at East Lake Golf Club, in honor of the legendary golfer who has impacted my life. The tournament helps raise funds to support education and research programs that help millions of people just like Jones and my son. To learn more about these projects go to: http://CSFinfo.org The Bobby Jones Classic for CSF is a true testament to Bobby Jones and his life as we all continue to “play the ball where it lies.”
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Linkedin CSF: Chiari & Syringomyelia Foundation