The Garza Family
Anita, Luis, Nico, and Mia
Folsom, California, USA
Mia was my second child, and she was born when her brother was only 20 months old. My pregnancy was very typical, and she was born at 38 ½ weeks so full term. She is now 14 years old and finishing her 8th grade year and is all set to start high school next school year! We did not get her CTNNB1 diagnosis until she was 9 ½. The first diagnosis we had was microcephaly and then infantile strabismus along with global delays. By the time she was three we had settled on the cerebral palsy diagnosis because we needed a label to continue services. We continued testing and trying to find a true diagnosis for the next six years until the genetic testing evolved enough to find the CTNNB1 mutation. Mia was the 24th child found with the syndrome worldwide.
Mia is a very funny, happy girl in this stage of life. She wants to be a comedian when she grows up and is constantly telling jokes. She wasn’t always this way. The first thing we noticed that was different was her crossing eyes at about 3 months. Luckily, the pediatric ophthalmologist we saw knew right away that Mia had infantile strabismus and it wasn’t something she would grow out of. We started the process of patching and glasses at four months old and tried to stay consistent for about seven years. That was tough. We still have not done the surgery because her eye sight is stable with glasses and at this point it would mainly be for cosmetic purposes.
At about 6 months old we started realizing that her other milestones were not being met so we started the testing. MRI, blood work, you name it. We didn’t find any answers but knew she needed support, so we started physical therapy at that time. OT followed and then finally speech. Mia took her first steps without the walker right around her 3rd birthday. She was able to say some words around 5 and now doesn’t stop. 😊 We went through a lot of behavioral therapy because she was in a very unhealthy habit loop of screaming for years out of frustration and not having the words to express herself. She used a PECS system and even an AAC device for a while, but we were able to progress her speech enough by elementary school that she was able to communicate on her own well enough. She does not use any sort of device to communicate.
The last few years, Mia has been very involved in girl scouts, special Olympics, and loves school. We have been blessed with great organizations that support her. She wears knee high AFOs every day but can walk without them. She has a 16-year-old brother who keeps her life busy and “typical”. He reminds me often that I need to make Mia do all the things he does at home (chores), and I appreciate that reminder. We built a pool a few years ago and that has become her favorite pastime from spring all the way through fall. Living in California helps extend the swim season. I am so grateful to have an activity she can do on her own that moves her muscles and helps her feel free with her movements.
We are a typical family who loves to be outside, exercise, and spend time together. I am so grateful to have found this community. Mia continues to progress in her academics, speech, fine, and gross motor skills with the help of therapy and great teachers. I’m not sure what the future holds, but I am optimist and full of hope!
Comments