Aeriel Calvert’s story
by Bretigne Calvert
When Aeriel was first born, she had problems feeding. Because her mouth was so small, she could not nurse easily and we had to feed her breastmilk through a tube. When we started giving her a bottle, she couldn’t handle it and would stop breathing while swallowing. Seeing her turn blue, over and over again, is still the most terrifying memory for me of her life so far (and I hope it stays that way.)
I think it’s because of her early problems that getting Aeriel’s diagnosis (IDIC15) did not affect us in the same way it did many other parents. After months of living in a state of panic (her feeding issue persisted until she was four months old), only to notice developmental delay soon afterwards, followed by the onset of seizures at around one year of age, I was so relieved to hear a diagnosis that was not immediately life threatening.
We had been living in Palo Alto, where Guy was working for Google, and when we received Aeriel’s diagnosis we decided to move down to the Los Angeles area to be close to my parents and sister who live in Burbank. We didn’t know it at the time, but the move would also put us close to the not-yet-established Dup15Q Clinic at UCLA, and our wonderful neurologist there.
Aeriel had already been in Physical and Occupational Therapy from around six months of age, when we first noticed her delays. Once in Burbank, we added speech therapy and infant stimulation to the mix, with the primary goal being to help her to attend to the world outside of herself, to make eye contact, to track moving objects and to develop an interest in toys, pictures, faces, anything.
Six years later, those efforts must have paid off because we now have to seal off much of the house from her inquisitive hands and eyes. She is interested in everything and especially likes to explore new spaces and find what’s inside them. She is also eager to get outside and will immediately locate the door in any new room or building. Although she’s probably still too small to get outside all by herself, we have enclosed our front porch in anticipation of the day when she is able to. She loves nothing more than to be outside in the fresh air or on her way to new places.
Aeriel attended preschool for two years, and while putting her in someone else’s care where I couldn’t see her was a scary thing to do, it turned out to be one of the best things we’ve done for her. We saw an immediate improvement in her focus and eye contact, and even in her physical stability and walking. Being around other kids her age and being challenged in the classroom were very stimulating for her. We were not happy with the school options for her after preschool though, and have chosen to homeschool her for now. She now has Pivotal-Response-Training ABA therapy five days a week at home, and she does equine therapy three days a week. She also attends a preschool-like class and now that she is sitting and attending better than she has in the past, we are hoping to find more classes and activities for her in the coming year.
I noticed Aeriel’s fist seizure when she was just over a year old, although we are not sure how early they started. They did mysteriously disappear for a couple of years, but have been back since she was about four. The past couple of years especially have been difficult as we have tried multiple medications as well as the modified ketogenic diet, with no success. We did start giving Aeriel CBD over two years ago, and only a few months ago were able to take the dose up to where we may be seeing some seizure control. (It has certainly helped with her sleep, mood and focus.) But we are far from out of the woods.
Aeriel is currently non-verbal, but she is very vocal and makes lots of babbling sounds. She will sometimes even sing her own version of “Happy Birthday.” And she is very social. She loves meeting new people, and this year she helped make cookies to take around town to some of the people she knows.
As stressful as dealing with the seizures can be, being around Aeriel is pure joy. She is happy, loving and very affectionate, and she seems to love her life and to be excited about all of her activities. She loves being outdoors and going places, she loves music and dancing around to it. She loves to swim (or even to take a bath!) and she loves riding her horse at horse therapy. She especially loves her older brother, Griffon, who she watches with great attention and who makes her laugh.