Chance L.
Indiana
Birth Date: December 27, 2011
Diagnosis: Mecp2 & Hypotonia
Theme: Pokemon
Due Date: June 15, 2021
Chance's Story
Chance has a rare genetic disorder, Mecp2. He has many health problems, and will always have medical needs all throughout his life. It's been a long journey since Nov.ember 2017. That was the year everything was coming undone. He forgot his name, who he was and what he had already learned. He started to act differently by playing with a car that wasn't there and to do the same movements back and forth. The doctors called it regression in a child. We didn't learn what he had until July 2020.
Chance was born with tremors. His whole little body shook all the time. When he was 2 years old, his tremors were mainly seen in his hands, but when excited and happy or scared and tiring out, his whole body will shake. The doctor said it's called tremors through the nerves system. Chance was clumsy. He falls going up stairs and coming down he scoots. He would walk into objects or walk funny. He also falls on uneven ground from cement to grass, and falls when he first wakes up. His legs were very weak, and there were days he couldn't move his legs at all. Doctors said he had DCD (developmental coordination disorder). Chance started to scream uncontrollably in 2017, saying his head and tummy hurt. That is still still ongoing. Always in pain, the doctor said it is from his hypotonia, seizures, and gerd with constipation.
Chance was diagnosed with Autism in July 2020. He was tested for many things in the genitics field and after 3 very long years we found out he has Mecp2. The entire family was tested for the inheirited disease. Thats how we found out ... he got it from me. I'm the carrier. Chance is always tired and sick, but he tries to do what other kids do, But only for a few minutess. Just enough time to pull out a camera to say he did it.
"Thank you, to ALL of the stitchers. Everyone put their hard work and care into this quilt and I know that there's not many people out there who do your work with your hearts. It takes your big hearts to work so hard on something that means so much to the child and to the parents. Chance smiled and wouldn't let the quilt out of his sight. Chance said you are his friends!"
