Maddie is a one-of-a-kind little girl made out of fire, spice and a little bit of something nice. She has an unbridled spirit that emanates from her eyes. In Maddie’s 22 months she has experienced quite a few things. Maddie was born on the heels of the historic Texas ice storm of 2021 and in a world-wide pandemic, on a Tuesday in early March. Keeping in beat with her grand entrance she had to recover from a bad batch of formula, (due to supply chain issues of the pandemic) at 3 months, but again she didn’t let that slow her down.
Her health had improved but we had anticipated a delay in walking so at 7 months, Maddie started physical therapy and eventually added occupational therapy. Even with her delay with crawling and walking she was still above average in her testing. We weren’t worried. Maddie was a fighter and again she came out crawling. Later than anticipated, but she did it. Overall though, something wasn’t right.
We were blessed with a great therapist who took as many notes as we did and one day one of her therapists pushed for genetic testing. At first I balked. Due to my older age I had wanted to take extra precautions to ensure Maddie was coming into this world with the best chance. I had genetic testing completed before pregnancy. I wasn’t a carrier for anything. I had Maddie tested in vitro. Nothing. My pregnancy had been closely monitored. From 5 weeks on. I had multiple ultrasounds and multiple 3d ultrasounds. Blood test completed. I did everything. Then I thought, it doesn’t hurt. Yes. Let’s test her.
The first genetic panel came back and everything was fine. but they asked if we wanted to do a broader genetic panel. To be sure. She was now 18 months and although crawling she was not walking. We were more confident than ever that our Maddie girl was fine. She’s just doing it her way. And that’s ok. Her mama and daddy always did it their own way too but…Let’s just do it. And well, the rest is history…..but it’s not. Rett is not going to write our little spit fire’s history. That’s for Maddie to do and she’s doing it but she needs your help too. She needs everyone’s help. While she fights to stay healthy scientists and researchers are searching for a cure.
This is why we have created this page to raise funds for the research. Rett will not write our Maddie’s story nor is it going to write any other child’s story. We will be their voice. We will be their strength. We will never give up.
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