“Levi was born on July 11th, 1998. He was a healthy 6lb 7oz bundle of joy. We had no clue at the time that he was sick with a deadly disease. He looked and acted like every other healthy baby.
Levi had frequent ear infections, but other than that he was normal. His head was a little larger than most boys his age, so we had an MRI done. The results came back with no explanations. When he was two we noticed a little delay in his speech, but our pediatrician said not to worry, that he would be fine and that we should just give him some time. Levi was able to count, write his name and draw pictures. He was even learning how to read. He learned how to ride a two-wheel bike by age 4. Around 5, doctors said he had ADHD. We dealt with it.
Things started to change more for Levi. We had him tested for Autism and several other conditions. Still we got no answers. At that point, we began feeling helpless, knowing our child was regressing in almost every way, but being unable to get an answer as to why it was happening or how to help him.
At age 8, he started to show a lot of regressions. His speech was really broken up. He had a hard time carrying on a conversation with others, and he was not able to write letters or draw pictures without scribbles. We were at a loss.
We had so many false diagnoses for Levi. In November of 2008, our genetics doctor said he wanted to do one more test. That turned out to be the final test.
We had to wait three long, miserable months for the results, but in February 2009 we found out our little boy had MPS III C, also know as Sanfilippo Type C. It was the worst day of our lives. We hear this, but go numb inside. The doctor tells us there is NO CURE and no treatment for this condition. He tells us that children with this disease usually die in their early teens. But we are not giving up hope. We are desperate to find a cure.
Levi is a happy boy and is so full of life. He is still able to ride his two-wheeled bike & scooter. He enjoys playing soccer, loves to play with Hot Wheels, and loves watching SpongeBob! He has a smile that will make your heart melt and a laugh you will never forget! He Loves to give BIG hugs and shows a lot of affection. He is very mobile and keeps us busy. He is such a blessing to our lives.”- Christi & Jason Omeroid.
Christi and Jason are C0-Directors on Jonah’s Just Begun, Board of Directors. Please visit Levi’s Life, Love & Laughter for more on Levi and his family. You can also get up to the minute news and pictures of Levi on their organizations Facebook page.