Levi was born on July 11th, 1998. He was a healthy 6lb, 7oz little boy. We had no clue at the time he was sick with a deadly disease. He looked and acted like every other healthy baby.
He had frequent ear infections, but other than that everything was normal. We thought. His head was a little larger than most boys his age. We had an MRI done and 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 he will be fine, just give him 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 wheeled bike by the age of four. All seemed to be just fine. Around age 5, doctors said he had ADHD and we dealt with it.
Things started to change more for Levi, we had him tested for Autism and so many other types of conditions. We had no answers. At that point you feel helpless, knowing your child is regressing in so many ways, but cant get an answer why this was happening or how to help him.
He was starting to really show a lot of regression as he turned eight. 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 diagnosis for Levi. We almost lost our faith in doctors ever finding out what was really going on with Levi. In November of 2008, our genetics doctor said he wanted to do one more test . Well, that was the final test. We had to wait 3 long miserable months for the results. In February 2009, was when we found out our little boy has MPS III C also known as Sanfilippo Syndrome type C. It was the worst day of our life. We hear this, but go numb inside. The doctor tells us there is NO CURE or treatment for this condition and children with this disease usually die in their early teen years. We are not giving up hope and are desperate to FIND a cure!
Levi is now 16 years old and is so full of life! Loves to give big hugs and shows a lot of affection. He has a laugh that you will never forget! He is still very mobile and keeps us busy! He is such a blessing to our lives.
March is the Month to Share YOUR Story!
Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.