“Mayson was born five weeks premature on October 11, 2021. We had known that he was going to be born a little extra unique since my 20-week anatomy scan. When the doctors first told us about Mayson’s arm and the things that it might be, we automatically did so much research to make sure we could accommodate Mayson the best we possibly could. One rare disease that kept being mentioned was TAR syndrome. At first, we didn’t really think was what Mayson had because our high-risk doctor said it was extremely rare for TAR syndrome to be just in one arm. It’s typically a bilateral disease. However, that was the official diagnosis we received during his NICU stay. TAR syndrome has given Mayson so many obstacles to overcome in his short 16 months of life, but he has shown all of us that there is not a mountain he can’t climb. TAR syndrome affects Mayson personally through his left arm. It is significantly shorter, turned in, and his hand developed a little differently.
Mayson has really struggled with how to use in his left hand in general. He has all five fingers on his left hand, but his tendons in his left thumb don’t connect causing him not to be able to use his thumb. He started seeing occupational, physical, and speech therapy around three months old. At 4 months old, he was able to figure out a way to use his left hand. It was amazing to watch him figure it out. He started using his pointer finger and pinky finger to pick up his food to eat and his toys to play. Mayson has also struggled with developmental delays over the past 16 months. His TAR syndrome causes his body weight to be uneven, which effects his balance. The way that his arm developed causes him not to be able to weight bear on it, because it will put him in a lot of pain.
Through hard work and dedication, Shelby Brown (OT) and Rachel Rudy (PT) have taught Mayson how to get to the places he needs to go. He can’t crawl as you might typically see a child crawl, but he has found several different ways to get around. He can belly crawl, scoot around, and if he needs to get somewhere fast, he’ll roll all the way there. He has also started to pull himself up to stand and is slowly but surely gaining the confidence to stand and take a few steps on his own! There have been so many people who doubted his abilities along the way, even some doctors, but Mayson has proven every single one of them wrong. TAR syndrome may have set him back a few steps throughout his life, but he has shown us all it’s nothing he can’t handle or conquer. His father and I are so extremely in awe of him, and we are blessed to call such a strong little boy our son.
Mayson has such a bright, bubbly personality. There’s not a room he can enter without lighting up everyone’s face. He is such a happy boy. His laugh is the most contagious of all. He can have you sitting in the floor playing toys just laughing at each other for hours. I don’t think you could talk to a single person who’s met Mayson without them telling you how much they love him. He’s so full of life and wonder. He loves getting out of the house and just exploring what this world has to offer. He’s also just a tad bit sassy!
The Kidz Club has been amazing! Mayson loves every single staff member he encounters. He always walks in with the biggest smile on his face. Mayson being able to get therapy while at the Kidz Club has been one of the biggest game changers for us!”
-Storme, Mother
