Keeping Noah comfortable and seizure free.
Noah has Dravet Syndrome, he was diagnosed in December of 2024.
Dravet Syndrome is a rare disease and a form of epilepsy with frequent and difficult to treat seizures and significant developmental delays.
At the moment Noah’s seizures are random and uncontrollable, his main triggers are Illness and heat. We are currently looking into other treatment options and there are treatment opportunities out of state.
Although there is a lot of unknowns until Noah gets older, our family remains positive and full of hope. God has brought such overwhelming support and kindness through our family, friends and community.
We are blessed to have Noah's Amazing care team at St. Mary's hospital and we are so grateful and thankful to you all.
So many people have reached out for ways to help, both near and far. Besides yummy meals and a warm shoulder to lean on, Noah will need a few things to keep him comfortable and seizure free in the warmer months and on his travels outside of the home. Here is a way you can help Noah!