Our daughter, Dawsyn, has a rare form of intractable epilepsy called Dravet’s Syndrome. She endures seizures every single day of her life.
Over the years, there have been many many ambulance trips to Alberta Children’s Hospital in order to administer the necessary medications to halt a seizure that just wouldn’t stop. As the years passed, we learned more about seizure management and our daughter’s neurologist became comfortable with us administering these medications at home. The only problem we encountered was that insurance would not cover the medications that are typically only administered at a hospital under medical supervision.
Despite letters from the neurologist attesting to our ability, insurance continued to refuse to pay for this very expensive medication that we needed to keep on-hand in case of emergency. We began to pay for them out of pocket out of necessity. These medications have a relatively short shelf life and would have to be replaced (at approximately $1000 per dose) every few months.
In stepped Hope for MVC Kids! They made arrangements with our pharmacy to cover the cost of these life-saving medication when they needed to be refilled. What a blessing that has been to us!
Here we are in 2021 and our daughter is now an adult. We are no longer eligible for the assistance of this wonderful local agency. In fact, there are no organizations that provide to adults that Hope for MVC Kids provides to children. This definitely leaves a gaping hole in services to adults with severe chronic needs.
Our family is forever grateful for the assistance we received from Hope for MVC Kids. They are an absolute blessing to families in our community who experience the devastating news of severe, and often lifelong illness, for their child.