August Alexander Disease Featured Warrior
shared by Hailey’s mom Dawn
Hailey was born perfectly healthy. She was such a beautiful baby, and was hitting all her infant milestones like rolling over and sitting up early. When she turned nine months old she suddenly changed. She began staring, had terrible constipation, wouldn't sleep more than 2 hours at a time, and was starting to fall over when she sat up . I was concerned and at her next pediatric appointment I told her doctor her symptoms. Her pediatrician thought I was just a nervous first time mom, and brushed it off.
Things continued to get worse. Hailey was refusing to eat, couldn't suck from a bottle or sippy cup, and she was losing weight. At 13 months she had her first grand mal seizure, it was 20 minutes long . At the ER they said it a febrile seizure and thought it must have only seemed like 20 minutes. She was given antibiotics for a double ear infection and released. She continued to have seizures, failure to thrive, constipation that didn't respond to medication, and still didn't sleep well. At 16 months she finally took her first steps, but would fall all the time. She was behind in her speech, and was missing milestones. At 23 months Hailey had a 90 minute seizure at home and was airlifted to a children's hospital an hour away. They did a brain MRI, blood tests , and told me she was fine. I later learned that first MRI at 23 months was indicative of Alexander disease, but was missed as simply immature white matter. We were send home again, without answers. This continued for years. At age 5 she was diagnosed with epilepsy and put on antiepileptic medications. I knew something more was going on in her body besides epilepsy. She had learning disabilities, couldn't walk far, she had an abnormally big head, speech delays, failure to thrive, she wasn't like other kids her age. She was five old and this is the first time doctors brought up the word leukodystrophy . They tested her for every leukodystrophy she fit the description of, but all tests were negative. We were about to give up our search for answers. At age 6 Hailey had a new , young determined neurologist in St. Louis. He asked me if Hailey could participate in a study on children with epilepsy, which included a brain MRI. I agreed. He also wanted to test her for Alexander disease. The day after the MRI the neurologist called us and asked if we could come in immediately. He recognized on the images the characteristics of Alexander disease. We waited 6 weeks for the genetic testing to come back, it confirmed the diagnosis.
I was absolutely gutted at the news. I was in total shock. I began searching online for any information I could get. I found the United leukodystrophy foundation and contacted them immediately. They were having their first Alexander disease conference in a few months in Chicago and invited us to attend. It was in 2008, and families with Alexander disease came from all over the world to attend. I met Dr. Albee Messing there, and saw how dedicated his research to Alexander disease was. It gave me hope that one day a treatment would be found. I stayed in contact with Dr. Messing through the years, as well as the families I met at the conference. We connected through emails, then eventually social media where we created a support group for families affected by Alexander disease. Families began a grassroots effort to raise money for research, we shared our stories to raise awareness.
Hailey was six years old when she got the diagnosis. She continued to attend school, with the help of an aid ,and this May at age 20 graduated from high school. Hailey loves to draw in her sketchbook, enjoys watching cooking shows, and wants to be a chef when she grows up. She has quite a collection of Barbie dolls, loves the color pink, shopping , and trying new restaurants.
Hailey has significant learning disabilities, struggles to walk, and her speech is difficult to understand so life can be challenging. A treatment could mean Hailey could stay stable, or perhaps it might get her walking better and not need her wheelchair. I believe it will happen, and increase her quality of life.