Dylan was diagnosed with Angelman Syndrome in July 2009 at 15 months old. Angelman Syndrome is a neurogenetic disorder that shares symptoms and characteristics similar to those associated with autism, cerebral palsy, and Prader-Willi Syndrome. This diagnosis meant many things…global developmental delay, sleep disturbances, seizures, walking/balance issues, he may never speak, physical/speech/occupational/other therapies, and daily medications. “Angels” are also known for their happy disposition and contagious laughter, despite all of the challenges they face. Thankfully the seizures have been pretty well controlled with medication, with a few outbreaks here and there, and Dylan is progressing well in school and all of his therapies, including therapeutic horseback riding! With all of the challenges he faces, the one thing that affects him and the family the most is the sleep disturbances. A lack of sleep on Dylan’s part means he can be lethargic throughout the day, being overtired may trigger seizures (which has happened), and he may not benefit from or be cooperative in school or therapy. Overtired parents cannot fully function either, so imagine sleepless nights occurring nightly for weeks on end, from the time of his birth. Exhausting!
We have gone through years of waking up multiple times throughout the night, one parent sleeping on the floor next to his crib or just putting him in our bed to begin with. Even in our bed he was waking up nightly. Dylan became mobile around the age of 2/3 and began trying and eventually succeeding climbing out of his crib, even with the mattress being lowered to the floor. This complicated the sleep situation even more. It meant he was in our bed regularly, unless one parent slept in the floor next to his crib all night to break the potential fall. He even managed to get out of our bed a few times without us knowing…talk about waking up in a panic! As Dylan has gotten older, the sleep disturbances have remained, but come in stages and are more spread out.
Dylan needed a safe sleeping environment that he would be unable to escape. We tried getting an adaptive bed approved through primary insurance and his secondary insurance (VA Medicaid) in 2015. We were unsuccessful – denied by both. Discouraged, we waited awhile before trying again.
In 2016, we pushed forward again, this time with more documentation detailing Dylan’s diagnosis, the medical basis and safety reasons for needing the bed, and near miss incidents…Dylan climbing out of his parents’ bed and wandering into the kitchen unnoticed, playing with the ice maker on the refrigerator, etc. (yes, that really happened!). We were denied by both again. This time we filed an appeal with VA Medicaid. The appeal was brutal – we had letters of necessity from numerous doctors, therapists, and even his teacher, detailing the effects of his sleep issues on his daily life and the medical necessity of the sleep environment (Courtney bed) for his seizure disorder. They barely looked at any of that. They just kept reiterating the fact that beds cannot be covered by VA Medicaid for safety reasons. They cover car seats, bath seats, and other items for safety reasons, but for some reason beds are not viewed in the same manner. There was a point in that hearing I almost burst into tears. I felt like that panel of three really did not care at all and had already made up their minds before we all sat down, no matter what was presented to them.
I gave up and put it in God’s hands to provide the bed needed for Dylan. There was just no other way (the co-sleeping continued). In November 2017, I received an e-mail from Dylan’s genetics doctor asking if we were still in need of an adaptive bed. She remembered the need from Dylan’s appointment about 6 months prior to contacting me. She put her nurse who was familiar with SMILE in touch with me. Not expecting anything to come of it, I filled out the application and returned it to her nurse along with some of the documentation put together for the Medicaid appeal.
In early January 2018, I received a call from Kristen with SMILE telling me that they were going to provide Dylan’s Courtney bed. I cannot begin to describe that moment…I was fighting hard to hold in the tears…happy, grateful tears!
The SMILE family (angels!) delivered the bed in March (St. Patrick’s Day!) along with a team of wonderful volunteers to assemble it. They even brought a set of sheets and a large supply of the disposable bed pads we use…I did not have to buy any for a few months! Dylan was so excited going in and out of his room during the assembly. He was getting his own bed in his room to sleep in by himself…what a day it was! These men took time out of their Saturday to come to our home to assemble a bed for a child they had never met. Still brings tears to my eyes. In Dylan’s room, I have posted the group picture taken at the end of the day of Dylan with Kristen, her dad, and the volunteers to serve as a constant reminder of the kindness and love everyone showed for Dylan and our family.
The impact this bed has had is indescribable. He willingly gets in his bed each night and falls asleep fairly quickly. Once he is asleep, the side is zipped up and he is set for the night. Dylan does still have some sleep disturbances, but we can rest assured that he will remain safe throughout the night, whether he wakes up or sleeps through the night, and will be in the same spot when morning comes!