(Posted November 3, 2020)

Amelia was diagnosed with 22q when her mother, Holly, was 22 weeks pregnant. Amelia’s biological father has the syndrome, so Holly wanted to be tested so she could prepare. Amelia was born in Omaha, Nebraska and currently is five years old.

When Amelia was six days old, she underwent open-heart surgery. She also had a catheter procedure at six months. Amelia will need another open-heart surgery, but she probably won’t have it until she’s 8 or 9 years old. Amelia has encountered other medical issues as well. When Amelia was younger, Holly noticed that she snored a lot. Amelia participated in a sleep study and was diagnosed with moderate sleep apnea. To help this problem, doctors removed Amelia’s tonsils and shaved her adenoids when she was two years old. Amelia’s family didn’t realize it at the time, but the surgery caused Amelia to lose her hearing. Because of the hearing loss, Amelia couldn’t talk properly anymore. Unfortunately, Amelia’s doctor wouldn’t try to find the answers to her problems. Eventually, Holly got frustrated and found another doctor. The new doctor tested Amelia’s hearing and discovered her eardrums weren’t vibrating and she needed tubes. After a five minute surgery and two years without answers, Amelia could suddenly hear again! As a result of regaining her hearing, Amelia’s speech is finally progressing. She still has mild sleep apnea, but sleeps with a C-PAP, which she tolerates really well. Also, about a year ago, Amelia underwent scoliosis surgery, her back had a 60-degree curve, and while her spine was getting longer from her growing, she wasn’t getting taller. Amelia has been relatively pain free since the surgery.

Amelia has done pretty well in school. Her biggest challenge seems to be making friends. Holly has allowed Amelia to participate in all of the activities she’s allowed her other children who don’t have 22q to do. Amelia has gone to zoos, fairs, hockey games, car shows, parades and motorcycle shows. Holly’s goal for Amelia is to live a normal life. And, according to Holly, Amelia always has a smile on her face no matter what she’s going through at the time.

Holly wants other children growing up with 22q to never give up. She says, “Face any challenge that comes your way because you will be stronger when you come out the other end.”