(Posted November 3, 2020)
Childhood with Addison was different, challenging, and exciting. She is my first and only child. Addison was having trouble breastfeeding, latching on, and gaining weight. She actually dropped a few ounces, which had us concerned. At her two-week well check-up, her doctor discovered a heart murmur. Then with later testing, she had developed a PFO and ASD. After that with genetic testing came back that she and I (her mother) had 22q11.2 microdeletion syndrome also known as DiGeorge Syndrome.
Primary through Elementary school, Addison was working with PT, OT, and speech. In preschool, we lived in Florida where speech and occupational therapy came to the school but physical therapy was done at home. We moved to North Carolina and her primary to elementary school years Addison has been on a 504 and IEP. She is now in middle school and still has both services as well as an EC teacher that helps with all subjects. We still have many obstacles to face as school gets harder, but Addi’s team is confident she will be independently working by the time she is in the tenth grade.
Addison attends the local public middle school but now, with Covid-19, it is all virtual, and she is doing well. Knowing the challenges to come our way we just stay as educated, and positive as possible. Addison is very active in dance, she does ballet, tap, and jazz. She loves swimming and is planning to play softball this spring. Besides those hobbies, she loves making tictoks with her cousins.
Currently, Addison doesn’t have any medical conditions other than her 22q diagnosis, she goes to cardiology every two years, and Genetics once a year. She also doesn’t have any major dietary needs however we include a lot of fiber, and protein in her diet as well as drinking a lot of water, she has never touched soda but, loves Gatorade.
I am most proud of how hard she works at school and her attitude to always help others. She just made a great accomplishment, after her first audition for The Nutcracker, she made a solo part as well as with Ensemble. She has two parts, and is in both shows this year!!!! We are beyond proud!
I have many goals for Addison’s future but my main ones include for her to stay healthy and happy, to see her graduate high school, and attend a 4-year college or university. I would also love to see her become a successful veterinarian since that’s what she’s wanted to be since she was little.
If I could give my advice to other children with 22q I would like to say, “Always be positive, stay focused, and when it gets hard don’t quit. Always be yourself, God made each of us unique in his own way. Also, be kind, be patient, and follow your dreams.”