Born: February 5, 2007
Illness: Opsoclonus Myoclonus Syndrome
Quilt Deadline: August 1, 2009
Theme of Quilt: Quilt is now full and closed. Please check the other children for stitching information.
The following interests are mainly to help you get to know the child better.
You may use what you can towards the theme of the quilt, but make sure that you stitch within the theme.
Travon's interests are: red or blue, likes Elmo, Spongebob, tractors, trucks, motorcycles, and monkeys. Travon lives in MO.
Click here to see the squares for Travon as they come in for him! (Please keep in mind that his quilt wasn't opened to stitchers until March 2009)
Biography
Travon was born on the morning of February 5, 2007 by planned c-section. Everything went perfectly normal with the pregnancy and the delivery. He weighed in at 7 pounds 2 ounces and was absolutely adorable. He had 15 month old big brother Tamarion to welcome him home along with friends and family from all around.
Travon began hitting every developmental milestone right on cue and was progressing wonderfully. He was incredibly smart and learned to walk on the day of his first birthday.
Everything changed on the evening of May 14th 2008. Travon had been fussier than normal that day, but was cutting teeth so we thought nothing of it. That night he walked over to me and I immediately noticed that his eyes were darting back and forth in his head. He was showing no other signs of illness so we put him to bed and thought everything would be fine in the morning. We were wrong. I got Travon up the next morning and stood him on the floor. He completely fell over and had no sense of balance at all, he was shaking all over, his eye movements were worse, and he was crying almost non stop. We took him to our local ER and kept him overnight for observation after an MRI showed nothing. We were then sent to St. Louis Cardinal Glennon Childrens Hospital the next morning and there began our journey into our new life.
Travon endured test after test, including MRIs, EEGs, CTs, and MIBGs along with urine and blood tests on an almost daily basis. We were sent home with a diagnosis of Accute Cerebellar Ataxia and told that Travon would be fine within 2 weeks.
This time the doctors were wrong. Travons symptoms continued to get worse and progressed to the point of him no longer being able to sit up on his own. We headed back to St. Louis and were placed with a different neurologist who had the answer we had been looking for. He began doing tests on Travon and finally diagnosed him with the extremely rare neurological auto immune disorder called Opsoclonus Myoclonus Syndrome.
Basically Travons own immune system turns against his own body and sends attack signals to his brain causing him to not talk, walk, and have a loss of balance and un-coordination. Travon is currently on monthly steroid treatments to keep his immune system suppressed and also gets monthly IVIG treatments. There is no cure for this disease, only treatment but we are hopeful for the best! Travon endures 3-4 days of therapy each week that include speech, physical therapy, and occupational therapy. He has learned to walk again and is re-learning how to talk. He truly is an amazing little boy!
Written by Travon's mom in February 2009
