The Cord Foundation: Wyatt's Story
About The Cord Foundation
Each year thousands of children are diagnosed with spinal cord tumors or gliomas and have no safe treatment options that provide a cure without debilitating consequences. Radiation is typically the prescribed therapy for treatment of this type of tumor in young adults, but can prove devastating for a small child, especially as the child continues to grow. So our only hope is that medical researchers can quickly develop a safer and more effective alternative to radiation.
Unfortunately, these types of spinal cord tumors are so rare that research toward that means is grossly under funded. In an attempt to speed up research efforts, we have created a nonprofit, charitable organization which we have fittingly named The CORD Foundation.
CORD stands for “A Cure for Others through Research and Development”.
Our mission is to find a cure for pediatric spinal cord gliomas by promoting medical research and increasing public awareness of spinal cord tumors.
The CORD Foundation is a 501(c)(3) non-profit, tax-exempt organization by the Internal Revenue Code.
Our tax identification number is EIN 20-1671966.
Donations and correspondence should be directed to:
PO Box 176775
Covington, KY 41017
We have had numerous inquiries from concerned people asking what they can do to help. Contributions are welcome to help fund research. Recently we heard from a man who wanted to help raise funds by asking an online us casino site to sponsor a tournament where a certain percentage of the winnings would be donated to the Cord Foundation. It turned out that corporate owners of the actual casino site would need to be contacted which was more difficult than anticipated. Nevertheless, we thank everyone who is trying to find creative ways to raise money for our research.
Wyatt was born on May 4, 2006. A year later, at the age of one, is when his symptoms really became noticeable. The symptoms included:
- Crying uncontrollably at times
- Frequent vomiting, especially upon awakening
- Choking on food or beverages
- Restricted movement in his neck
- Poor balance as he favored leaning to his left
- When his lack of balance caused him to fall, he would not put out his arms to catch himself.
From May to August of that year, we made five separate trips to the hospital emergency and they could not come up with any answers. Finally in August, they did a 12 hour M.R.I. (Magnetic Resonance Imaging) which is a medical imaging technique used in radiology to visualize detailed internal structures. The M.R.I. revealed a solid mass inside his spinal cord starting at level C2 and going all the way down to C7. (The cervical vertebrae are numbered, with the first one (C1) located closest to the skull and higher numbered vertebrae (C2-C7) proceeding away from the skull and down the spine.)
They informed us that his brain was swollen as well as his brain stem and cord. They admitted him to the Critical Care Unit until they could get the swelling down to where it was safe to try to surgically remove the mass. Five days later, after heavy doses of steroids were administered, a 12 hour surgery was performed and the tumor mass removed. After examining the tumor, pathologists determined it was a ganglioglioma tumor, a tumor that arises from ganglion cells in the central nervous system.
The surgery was extremely risky due to its delicate location, so close to the brain stem which controls all major body functions. And damage to the spinal cord could cause paralysis from the point of injury down, which for Wyatt would be from the neck down. That paralysis would have the effect of paralyzing his breathing capabilities.
Wyatt came out of the surgery grabbing at and trying to remove his breathing tube. He was able to move his arms and eventually regained his sense of balance. Happiness was all of ours once again.
It was decided that M.R.I.’s needed to be administered every three months to monitor the possible re-growth of the tumor.
He came to be monitored by a large team of physicians, an oncology neurologist, a neurosurgeon, a physical therapist, an occupational therapist, a physiotherapist, a urologist, a cardiologist and an ophthalmologist specialist.
In the summer of 2011, it was clear that the tumor had returned. This was confirmed by the increase in his symptoms and the latest M.R.I. showing growth. The symptoms at this point included:
- Trouble walking
- A lot of pain in his neck, back and legs
- Slowly losing control of his bladder and bowels
The tumor appeared larger on the M.R.I. spinal cord transports, causing the conclusion that another life-threatening surgery needed to be done. On September 19 of 2011, a second surgery was performed to remove the new tumor. We were told that this type of tumor is able to be fully resected (removed surgically) with a good chance of not growing back again.
We were elated at the report from the surgeon immediately following Wyatt’s surgery. It appeared the entire tumor had been removed. And Wyatt amazed all of us at how fast he began his recovery as we was sitting up the next day and was soon bright eyed and smiling to all who came to see him, to the utter amazement of all his visitors, family and friends.
He expressed daily determination to get back home to his farm and after one week in DeVos Children’s Hospital and one week at Mary Free Bed Rehabilitation Hospital, Wyatt got his wish as he returned to his beloved farm and life on the farm.
But at first he still had to go to outpatient therapy four to five times a week. But by the end of February here in 2012, he has now been decreased to two times a week and both times on the same day. The pressure type therapy they apply has been especially helpful with his headaches, which he suffers on a daily basis. He also will be having therapeutic horseback riding sessions, when the winter weather breaks. Wyatt loves horses so this will be an amazing and exciting form of therapy for him.
Wyatt has a tougher time in the mornings and is a very slow starter. He suffers the most pain in the morning after lying down and putting pressure on his spine during his sleeping hours but once he gets going, it is hard to slow him down.
He still is scheduled for M.R.I.’s every three months and his latest one in December revealed a spot that had his surgeon, Dr. Stanley Skarli, concerned. He said it could be a tumor, scar tissue, or imaging. He said only time and further M.R.I.’s will tell.
But then the oncologist caused us new consternation with her diagnosis that the tumor is located next to a large blood vessel that feeds the spinal cord. She tells us that the tumor will never be able to be completely removed. She said her prognosis is that Wyatt will be able to live into his teens with surgeries every four to five years to de-bulk the tumor and relieve his symptoms.
So here we are waiting for another M.R.I. in March and hoping and praying for the best but prepared for the worst of the above diagnoses. Many prayers are very much needed. And we are now involved in actively supporting research into these tumors in hopes a cure can be found in the not-too-distant future.
At this point in time, Wyatt drops a lot of things due to his inability to feel with his hands from the injury to the spinal cord but it is amazing to see how he compensates. Sometimes he has a lot of painful tingling that he likes to call “bee stings.” This sensation is most likely due to the nerves being restored after surgery but we are still not sure if he will get the feeling back over time. They say it can take up to eighteen months to know.
Currently, Wyatt is homebound schooling due to his pain levels but hopes to go back to half days at school very soon. He is registered as a kindergartner at Alto Elementary School.
CORD Foundation Awards Grant to Dr. Jane Johnson
Jane Johnson, PhD
UT Southwestern Medical Center
The Nichole Silversteen Research Chair recipient
The CORD Foundation is thrilled to announce Dr. Jane Johnson as the recipient of The Nichole Silversteen Research Chair. As a result, the University of Texas Southwestern will receive $300,000 over the next three years to fund her research project entitled, “Spinal Cord Progenitor Cells: Distinct Molecular Characteristics and Involvement in Tumor Formation.“ Dr. Johnson is a preeminent spine scholar and Chair of UT Southwestern Medical Center’s graduate program in Neuroscience. Her research examines the formation, generation and treatment response of spinal astrocytomas.
This award honors the life of Nichole Silversteen who was diagnosed with a spinal glioblastoma at age 21 and tragically lost her battle with the cancer just two years later. In her memory, her family and friends established the Nichole’s CORD chapter of the CORD Foundation in Philadelphia in 2007, hoping to spare others the devastation of their loss. Inspired by her battle, Nichole’s brother Jason has decided to pursue a medical career in the field of neurology and will, coincidently, be completing a fellowship at Texas Southwestern sometime next year. To learn more about Nichole’s courageous battle, click here.
On behalf of CORD Foundation, its many supporters, and most importantly those who suffer from spinal cord tumors, we would like to thank Dr. Johnson for her interest and dedication to finding a cure for this devastating disease. We look forward to receiving word of her progress, and we pray for her success.
CORD Foundation Awards Grant to Dr. Sockanathan
Shanthini Sockanathan, PhD
Johns Hopkins University
The Kennedy Snyder Research Chair recipient
The CORD Foundation is thrilled to announce Dr. Shanthini Sockanathan as the recipient of The Kennedy Snyder Research Chair. As a result, Johns Hopkins will receive $300,000 over the next three years to fund her research project entiltled, “Molecular Mechanisms of the Glial Specification and Differentiation in the Spinal Cord.“ Dr. Sockanathan is an Associate Professor of Neuroscience at The Solomon H. Snyder Department of Neuroscience at Johns Hopkins University School of Medicine. The focus of her laboratory is directed towards understanding the signaling events and molecular mechanisms involved in neuronal fate specification.
This award honors Kennedy Snyder who was diagnosed with a high-grade spinal cord tumor at age two and continues her battle today at the age of nine. Kennedy and her family and friends founded Kennedy’s CORD Foundation chapter.
On behalf of CORD Foundation, its many supporters, and most importantly those who suffer from spinal cord tumors, we would like to thank Dr. Sockanathan for her interest and dedication to finding a cure for this devastating disease. We look forward to receiving word of her progress, and we pray for her success.
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