Madison Simons, a 20-month-old child has visited the hospital more than 12 times and spent more than 50 days at the Baylor Scott & White McLane Children’s Hospital this passed holiday season, reported KWTX. Madison suffers from a rare genetic disease that promotes a mutation in the POGZ gene. It’s been a scary time for her and her family, and while they didn’t get to spend Christmas at home, they were happy to eventually go home and ring in the New Year on a positive note.
A POGZ genetic mutation causes developmental delays, and may be a subtype of autism. Symptoms are often aggressive, especially for a child, facing pneumonia, eating and digestive issues, as well as breathing complications. Madison needs constant care, relying on her mother Crystal Haubert to operate her medical machines that aid her every day life. She cannot breath or eat alone without that assistance. Her mother expressed she also needs a wheelchair soon to make it a bit easier to move Madison around. Yet, she keeps getting denied since Madison is still so young and small. Having a wheelchair would help keep her movement smoother, as right now they have to be very careful with her trach issue. It’s extremely sensitive.
While it’s been a lot for the family to handle, they aren’t experiencing the difficulties alone. Thankfully, the community has really stepped up and been the friends they needed. Antioch Baptist Church put their hands to work installing flooring in their home and building a cabinet to store all of Madison’s medical products. They also bought gifts for her siblings at Christmas. Crystal expressed her extreme gratitude for the community as she doesn’t know if she could do it all by herself.
We hope 2018 continues to bring Madison and her family joy and positive progression as she continues to battle her disease.
