I would like to tell you about my beautiful daughter Azalea. She was born on October 12, 2015, 3 weeks early, weighing 10 lbs 12 oz. As a baby, she hated tummy time because she wasn’t strong enough to keep her head up. She had a hard time sucking, so pacifiers were out of the question. I remember nursing her and her lips would turn blue and she would start to choke. Come to find out from a swallowing video, she was aspirating. At age 1, she started physical, occupational and speech therapy. The therapists said she had low tone muscle, and with some therapy she would be walking. And in fact, with lots of practice, she started crawling when she was 15 months old – a very exciting and huge milestone for her. By 18 months, Azalea had a swallowing video scope for possible cleft in larynx, tubes, adenoids shaved, hearing tested, physical occupational speech therapy, testing for autism, and blood taken for different tests. The doctors had no idea why Azalea wasn’t hitting her milestones and having so many health problems.
On July 28, 2017 I received a call from her pediatrician. I thought it was very odd to hear from him directly and not from the nurse. He had received blood work back for genetics. His voice seemed very sad and concerned. Azalea had Rett Syndrome. I asked him what it was and if she would always have it. I had never heard of Rett, and had no idea what it meant. The next few months I spent obsessing over researching Rett. I found a support group on Facebook that has some amazing people to talk to. I felt broken, like I had failed my daughter on giving her an amazing life. I thought about her not being able to fall in love, and have babies – things that parents dream about for their kids. Even after a year, I can not think about Azalea’s life with Rett Syndrome and not get choked up.
“I long for a cure for her, and I would give anything to see her have a life without pain”
Right after Azalea’s diagnosis she started having seizures. The doctor had us go to the emergency room to start an IV with seizure medication. That way it would get in her blood stream and start working faster. She was on that medicine for 6 weeks – actually it was a horrible 6 weeks of side effects from the medicine. Azalea had mood swings, and would be hostile for most of the day. She had diarrhea, headaches, and was very tired. I ended up feeding her supper every night in her wagon, outside with her favorite toys and music. That was the only way she would be calm enough to eat. The doctor let us switch to a different anti-seizure medication thank goodness. As a mom with a Rett child, you really need to be your daughters voice. And you have to stand up for her if you see she is not happy or suffering.
We took Azalea to the Nebraska Rett Syndrome Strollathon, and we were able to meet other girls and parents. I was also told from another Rett mom about the Rett clinics that are available. I quickly looked into it and got Azalea an appointment in Colorado when she was 25 months old. I also put her into the Natural History Study that is also being run out of the Rett Clinic at Children’s Hospital Colorado. We learned so much from the RMRA experts and the Rett Clinic at the Children’s Hospital Colorado. We will go back every 2 years for the clinic and every year for 5 years for the Natural History Study.
Azalea will not be defined by Rett, but will overcome the challenges that she will face with her diagnosis. She will be defined by her amazing personality and the love that pours out of her.