The first time I tried to schedule a time to meet Kellen his nurse Jenny told me, “Try to be here around 3:30. He will probably be awake by then.” In order to try to manage Kellen’s hundreds of seizures a day and the massive amounts of pain they bring, Kellen is heavily medicated. For the past decade doctors have been trying to manage his seizures with extremely potent drugs. Over time his body has built up a tolerance to the drugs, so much so that the dosage has increased to levels that would kill an average adult if they were not put on a ventilator to assist in breathing.
Kellen sleeps upwards of 20 hours a day. The drugs make it hard for Kellen to use the bathroom. Sustaining and managing this type of life is something that Kathleen and Keith, Kellen’s parents, know is not what they want for their child. Kathleen asked me, “What type of life is this for my son?” Over the years they have tried everything to improve Kellen’s life. Any new medical trial or surgery that would had potential to improve Kellen’s life his parents would try. After 10 years Kathleen and Keith are tried of having things done to their son, they want treatment that is for Kellen.
At the beginning of the year New York University was starting a new clinical trial that looked promising. Dr. Orrin Devinsky, Director of the Comprehensive Epilepsy Center at New York University, was given approval by the FDA to conduct a clinical trial that studies the safety and tolerability of cannabidiol (CBD) in children with epilepsy. In order to take part in this clinical trial Kellen would have to be able to return to New York City from their home in Greensboro, NC every 4 to 6 weeks.
That is where Children’s Flight of Hope comes in to the picture and does what they do best. Children’s Flight of Hope took the burden off of Kathleen and Keith of trying to figure out how they will get Kellen to this possible life improving clinical trial. Children’s Flight of Hope being able to offer Kellen’s parents private flights has made the task of getting Kellen to New York City the one thing they don’t have to worry about at all.