Make A Child Smile

Travon's Story
written by mom Jodi

Travon was born a healthy 7 pound 2 ounce baby boy on the morning of February 5th 2007 by c-section. He was welcomed by mommy, daddy, and 15 month old big brother Tamarion.

Travon began hitting every milestone perfectly and we were amazed at how fast he learned things. He started walking on February 5th 2008, the day of his first birthday! Summer was then fast approaching and we were excited to spend time outside swimming and playing. None of that was to happen though.....

On May 12th 2008, we saw the first signs that something was not right with Travon. His eyes began darting rapidly back and forth, but other than that he was fine. By the next morning, Travon could barely stand up, he was extremely shaky, and the eye movements had gotten worse. We immediately rushed him to the ER where they did an MRI but found nothing. We were sent to St. Louis Hospital the next morning to see a pediatric neurologist. We were there for approximately 1 week, seen by MANY doctors who put him through test after test trying to figure out what was wrong with him. He tested positive for Rotavirus but that was all they found.

We were sent home on May 19th with a diagnosis of Acute Cerebellar Ataxia. This is something that can happen with a viral infection and will go away on its own after a length of time. I felt in my heart that this was not the answer to what was going on but was unsure of what to do because the doctors had found nothing else.

I dropped Travon off at my parent's house on June 14th. He was acting "normal" at the time, still shaky and such. but nothing had worsened. We received a call the next day, June 15th, that Travon's eyes were rolling up into his head and he was spacing out and not responding to anyone. We immediately went to get him and I called the doctor in St. Louis. She was out of the country and no one else knew what to tell me. We went to the hospital on June 18th and were once again admitted, this time for 10 days.

Travon had a huge amount of testing done during this time which included an MRI, MRA, MRV, 3 EEGs, CT scan, countless blood and urine tests, and an MIBG scan done. On June 23rd, 2008, doctors gave Travon the diagnosis of Opsoclonus-Myoclonus-Ataxia Syndrome (OMA or OMS) and he began receiving IVIG as a temporary treatment. The MIBG scan was performed on June 26h and the next day I received the news that they had found a tumor on one of his adrenal glands...it was Neuroblastoma. We were sent home and I frantically began searching the internet for any information I could find on these diseases.

I found one of the worlds only OMS doctors, Dr. Pranzatelli, and made an appointment to have him see Travon on July 17th. Travon was diagnosed as a severe case of OMS and needed to begin triple therapy to get it under control. Travon's triple therapy included IVIG monthly treatments, 2 doses of a chemotherapy drug Rituxan, and monthly doses of a steroid called Decadron. On August 20th, Travon had surgery to have a port placed under his skin so he does not have to endure IV sticks every month for his treatments.

Travon had speech, physical, and occupational therapy evaluations done because he had lost all motor and verbal skills and function from the OMS and began those in early September. On September 14th he officially began walking again!! October 1st, the doctors performed another MIBG scan to see if the tumor on his adrenal gland was still present and the results came back to show that it in fact was GONE!! It was the answer we had been hoping and praying for!

Travon is still currently receiving his monthly treatments of IVIG and Decadron. He has begun to say a few words and has done great at picking up on sign language. He still has a long road ahead of him and we are hoping that he will make a complete and full recovery and that there will one day be a cure for this awful disease that attacks perfectly happy, healthy children!

(Story and Interests were last updated February, 2009)