Posted January 18, 2023

Hello, my name is Sara, and I am going to be telling you about my daughter Myla.

Myla is a little over four years old now and although she has been through many challenges she is loving, compassionate, and kind. She loves going to Preschool and is currently learning how to use an AAC device to help her communicate with her teacher and peers. As Myla has gotten older, she has gotten more and more adventurous! She loves going on cross-country road trips, indoor skydiving, zip-lining, attending dance classes, riding rides at amusement parks, playing outside, spending time with her Mama, and Grammy, and playing at home with her dog, Zoey (Labrador). Myla fills everyone’s hearts with love when she meets them and fills our home with love on a daily basis. We try to make every day a great day for her, and she does the same for everyone around her. However, we know that is not always possible, and that’s okay too. Even if it is a bad day, there is always something to be thankful for.

Myla was born full term. My whole pregnancy everything was said to be absolutely perfect in every scan and ultrasound that we had received. As a first-time mother, I was very nervous and excited to be bringing a wonderful child into the world. After a complicated labor, Myla was born via C-section. Once I was in recovery, the pediatrician informed me that she had a heart murmur but everything else seemed to be fine. Within the next few days, other things happened, and we were advised we should transfer her to the NICU at our nearest Children’s Hospital. It was there in the NICU, we received Myla’s 22q11.2 deletion diagnosis, as well as her Tetralogy of Fallot diagnosis and a few more. After that I was informed how lucky we were that she was a “pink tet”; which meant she would be able to wait until she was a few months older before needing her first open heart surgery, this was amazing news!

Myla received her first heart surgery at the age of 5 and a half months old. With a lot of praying and hoping, she made it through great and was out of the hospital in 7 days! She had a heart catheterization in April of this past year, and everything went great! We’ve followed with every specialist I can think of in Children’s Hospital and at home! This includes cardiology, immunology, endocrinology, cleft craniofacial, plastics, ophthalmology, audiology, occupational therapy, and speech therapy. Myla had her first seizure in 2020, where she had to be resuscitated and life-flighted to Children’s Hospital. After one more seizure and a three-day stay on the neurology floor of the hospital; she was diagnosed with Epilepsy and put on seizure medication. She was on seizure medicine for 2 years, after two years of being seizure free she was weaned off her seizure medicines and this June will be one-year free of seizure medicine and seizures for Myla! What a blessing!

If Myla learns anything from me, I want it to be that you can do anything you set your mind to, and always remember you are loved exactly the way you are, so be who you want to be; not something someone else expects you to be. We hope that everyone else with 22q remembers that on even the worst of days there is something to be thankful for and that you truly are perfect just the way you are. Don’t change who you are for anyone. You are loved, I am loved, we are all loved; exactly the way we are.