Watching Sesame Street, Peg + Cat, Blues Clues. Loves Elmo, music, Mickey Mouse
In 2019 my son was diagnosed with MECP2 Duplication Syndrome. It has taken me a few months to really process everything. I didn’t get my son’s diagnosis in the way you would think. We weren’t in a room full of medical professionals ready to answer questions and offer support. I found out from the hospital app.
Jackson was a healthy, happy baby. We did not suspect anything was wrong until he was about 2 months old. He began experiencing severe GI related issues (vomiting, fainting). We began to see multiple specialists. As he grew, we began noticing more than just his feeding difficulties. He was struggling to meet milestones, which lead us to getting a neurological exam. His doctor suggested genetic screening to help rule anything out. It was that testing that gave us his diagnosis.
Thankfully, we have since began to develop a support team. This experience has fueled my fire to fight for these children and their families. My hope is that no parent has to feel lost like I did.
Jackson’s family wants you to know:
Getting this diagnosis is absolutely life-changing for the entire family. But it is not the end of the world, it is a new beginning. You are your child’s biggest advocate. Help them fight when they cannot. Help be their voice. Your encouragement helps them more than you can imagine. Never give up the fight. Don’t be afraid to ask for help.
You can follow Jackson on Facebook at Jackson’s Journey (@JacksonsJourneyMECP2)