Chapters

Hartford Marathon

On Saturday, October 15th Vinnie Dejana will run the Hartford Marathon in support of  Kennedy and the CORD Foundation.  As a friend of Kennedy’s family, and father of two young daughters himself, Vinnie wanted to do something to recognize the strength and resilience he saw in Kennedy.  Vinnie wanted to utilize his efforts in running the marathon to support a great cause and to help find a cure for pediatric spinal cord tumors.

Please show your support of Vinnie and the CORD Foundation by making a tax-deductible donation using the button on the right.

Steven
Steven is 17 and the second of five boys in his family. He has always been a great guy with drive and ambition, honesty, and straight A’s. Most importantly, he has a great big, kind heart. Steven was 16 in the spring of 2007. He was enjoying a workout with his friends from DeSmet Jesuit High School when he noticed his hands and lower arms going numb after working out. Steven also had pain every night while he was trying to sleep and it was increasing.  Amazingly, these were his only symptoms.

We spoke with our family physician who took an MRI to rule out disc problems from lifting weights. What they found was a massive growth from C1 to T2 in his spinal cord. The neurosurgeons we consulted agreed on removal of the tumor, either partially or completely. This would leave Steven paralyzed and possibly ventilated, but definitely not intact.

Steven saw many doctors over the summer and had stayed on steroids for 4 months while we were trying to find alternative diagnoses, treatments and confidence in our decisions for his health… After consulting with adult neurosurgeons and our pediatrician, we chose neurosurgeons at St. Louis Children’s Hospital to do the biopsy as to accommodate our family.

A biopsy proved the growth to be an intramedullary spinal cord ependymoma, grade II. Radiation was proposed by our Radiologist/Oncologist, and he felt confident it could stop the tumor from growing for an unspecified amount of time, but would leave him intact for the immediate.

Steven finished his last radiation treatment October 20th and is off the steroids he needed to control pain. He has numbness of his left foot and left side from the biopsy which may or may not subside. He is anxiously awaiting his stomach pain and nausea to pass.

There was an MRI performed in November 2007, following radiation, which showed the tumor to be unchanged. Steven will have many more MRI’s in the years to come as we wait to see the progression of the tumor. He is hoping to return to school soon and just feel good again.  Steven has many good friends who are always here for him…Mike, Mitch, Dave, Brad, Adam, Ricky, Jacqueline, Critter, Caroline, Melissa, Alex, Tyler, Dan, Erin, Angie, Jill, G and G, D’s, the G’s and many more have helped encourage Steven through this time.

Steven and our family are honored and excited to be the Missouri Chapter of the Malia’s Cord Foundation. Whatever we can do to help others in our situation, we are pleased to do so.

See Steven’s other CORD Foundation webpage at http://www.stevenscordfoundation.com/

Nichole’s Story

January 6, 2011

It was summer 2003 and Nichole was living with friends at the New Jersey Shore. Having just turned 21, she was getting the most out of the beach and the happy hours when her right leg became numb and difficult to control. As the numbness began to creep up her right leg and to her [...]

Read the full article →

Kennedy’s Story

January 6, 2011

Kennedy has always been a happy, social child.  But, soon after the arrival of her little brother, when she was just two years old, Kennedy began waking up at night screaming in horror.  On car rides she would begin screaming that her neck hurt and she was inconsolable.  Doctors maintained that it was a cry [...]

Read the full article →

Malia’s Story

January 6, 2011

At 2-years of age, Malia was diagnosed with an intramedullary astrocytoma, a tumor within her spinal cord. Despite two surgeries within 10 months, surgeons were unable to remove the entire tumor. Because the tumor cells had so infiltrated the tissues of the spinal cord, full removal would have resulted in neurological damage ranging anywhere from minor sensory loss [...]

Read the full article →