Meet Sophia
Sophia is a North Carolina girl living in Greensboro, NC, USA with her grandparents. She is an animal lover with three cats and her dog. She loves sleeping with mommy, “Lambie”, swimming, listening to music (especially country), going to aquariums, and chewing on grandma’s hair. It must be mentioned that she loves to eat!
Sophia is a TBCK warrior through and through. Like many of the other TBCK warriors, her severe hypotonia (low tone) is central for many of her challenges. Even mild colds can require suctioning due to the presence of low tone. Sophia and her family monitor all areas of her health and continue to find ways to treat the different conditions that present with the diagnosis of TBCK.
Sophia is well-supported through her programming at a special needs daycare where she receives her therapies. All of her hard work is paying off and she continues to make progress!
“I feel that the most important thing for others to know is that YOU are your child’s voice. You have to fight for their rights, fight for their medical care, fight for the best therapists in your location... It is ok to push your doctors when your gut is telling you something different then they are saying. You know what is your child’s norm, they don’t. Doctors are just people. It is ok to question them, challenge them, get 2nd opinions...Even though our child may not be able to talk, they are “in there”—get down to their level, make eye contact and talk to them. ”