(Posted December 3, 2020)

Evan was diagnosed with 22q when he was three days old. When his 24-hour oxygen screen came back low, Evan was taken to the NICU where the doctors discovered he had a boot-shaped heart, an indicator for tetralogy of Fallot (TOF). After genetic screening, Evan was diagnosed with 22q. He had surgery when he was 16 days old to correct his TOF. Now, at 5 ½ years old, Evan currently is healthy and only requires yearly cardiology check-ups. So far, he has had a good childhood growing up in Syracuse, New York.

Like most children his age, Evan is in kindergarten. He previously attended a year of preschool. Evan currently is in a blended classroom so he can get help with his speech. Speech has been Evan’s biggest challenge, but he has almost caught up with the rest of his class. Improving his speech has been one of Evan’s biggest accomplishments.

Evan loves being outside. He enjoys swimming and driving his power wheels cars. Going to his uncle’s camp in the woods is one of Evan’s favorite things to do.

As Evan looks toward the future, he plans to keep going and never give up – advice that he and his family would like to share with other children living with 22q. Evan’s immediate goal is to finish kindergarten.