Posted February 1, 2023

Weston is from Greenfield, Indiana born in July of 2020, he is 2 years old and 100% a curious toddler! Weston has an older brother (who does not have 22q) who is seriously his number one fan!

We found out shortly after birth that Weston had some sort of condition when his newborn screen came back positive for an immune deficiency, shortly after we were referred to our local children’s hospital and submitted to genetic testing. Weston was 3 months old when we found out he had 22q deletion. It was definitely something none of us have ever heard of before and was also a scary time for us as we knew nothing about the condition and learning about 22q was definitely overwhelming. However, it was also a sign of relief as everything was finally being pieced together.

Weston is currently learning simple sign language to help communicate better as he does have a speech and developmental delay. He works hard 3 days a week completing his speech, physical and developmental therapies, even on days when he isn’t feeling his best.

Weston loves to play with his play kitchen and cook us all kinds of foods and helping momma “vacuum”. He loves to color and being outside. He is also a water baby as he loves playing in the water whether it be at bath time or swimming in the summer! Weston also loves spending time with his beloved older brother.

As with many children and adults with 22q, Weston faces many medical challenges, he has a heart defect, palate and thyroid issues and an immunodeficiency but we strive to continue to get him the best care possible. We are thankful to have access to two children’s hospitals in our area and a medical team who are knowledgeable in patients with 22q.

Having a child with 22q has definitely made our family stronger and has helped my older child learn that everyone is unique in their own special way.