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My husband, Andrew and I, married in 2012. Our oldest son, Aldyn, was diagnosed with autism shortly after, so we decided to hold off a bit on growing our family. In 2013, we decided to have a second child. On May 17, 2014, we welcomed Axton Kent into the world! Immediately, we knew something wasn’t right. He had a droopy face and struggled to take a bottle. He was also born with a cloud over his eye, which the doctors called Peters Anomaly, so he was taken to the NICU on his second day of life. We did genetic testing to find a cause for the Peters but instead found out Axton has 22q Deletion Syndrome. He was 4 weeks old when we got the results. We jumped into PT, OT, and early intervention and began learning all we could. I unfortunately suffered from anxiety, depression and PTSD from his first few days of life. I am, however, so thankful to have already had a special needs son so I knew how to advocate. As Axton has grown, his Peters Anomaly has cleared up without surgical intervention. He was born with an ASD and VSD, both self repaired without surgery. He had to have a sub-mucous cleft palate repair when he was 3, and had a feeding tube from 18 months to a month before he turned 5. He also had a few silent seizures as a baby and GERD. He has microcephaly narrow ear canals (frequent ear infections), nasal speech and dental issues. He wears glasses and looks awesome with them on! He has a speech delay, low muscle tone, flat feet, a weakened immune system (going out during cold and flu season is terrifying to us), and global developmental delays. He also struggles with emotion regulation but he’s learning how to express his feelings daily. He loves schools, his brothers Aldyn and Amerson, his cats, and his mama and daddy. His Papa is his buddy and he loves lollipops and cuddles. He’s a kind and compassionate child and can tell you anything about PJ Masks. It takes him longer to learn something, but once he does, he’s a pro! Axton has taught us to treasure the little accomplishments and to slow down and enjoy life. I found advocating for my child means advocating for all children and that is so empowering. One child, one mother, can change a broken system. He knows he has 22q and is so proud of who he is. We’re thankful Jesus trusted us with Axton and are thankful for the community He gave us for the journey.

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