4 Paws for David DesJardins

Hey Friends & Family!

We wanted to start by saying thank you for taking the time to share and read our story. We are currently raising funds for our sweet son, David to be able to receive a service dog through 4 Paws for Ability. For those that may be hearing this story for the first time, our hope is to educate the community of the reality of our daily life and struggles with having a child with Dravet Syndrome. So buckle up! Its a bit of a bumpy ride but I assure you, it's filled with plenty of joy and triumph and the best part is.... its NOT over yet! 

David was born February 2, 2015 and was a completely healthy and chunky little guy! He is our first baby and we were thrilled to be parents. Watching him grow and develop daily was such a joy and we couldn't wait to see what he would discover next. In September of 2015, our little family decided to go on our first little getaway to Traverse City, MI. When we arrived at our hotel, we were unpacking our luggage and getting settled. It was later in the evening and we were trying to get our little rambunctious baby down to bed when we noticed something wasn't right. He was playing and making strange movements with his face, his breathing changed, and his body started convulsing. David was having a seizure. Holy cow! What do we do? We knew nothing about seizures and now we were in an unfamiliar town in a hotel that I didn't even know the name of yet! We called 911 and they took us to the Munson Medical Center.  Loads of tests were run and they concluded that David "just" had a febrile (fever induced) seizure. After hours in the hospital and zero sleep we decided to pack up and go home as soon as we got back to the hotel. We followed all precautions and followed up with his pediatrician and came to the conclusion that "these things just happen, he is just fine!"

We continued on with our life as normal for about another month until David had yet another seizure, this time not provoked by a fever. We called an ambulance again and were rushed to Mott Children's Hospital in Ann Arbor, MI where we underwent an overnight EEG and many other tests. Now we were being told that our son indeed had Epilepsy and that we would need to start seeing a neurologist to come up with a treatment plan but this was something he could potentially grow out of as he gets older. We had to start anti-epileptic medication to help control his seizures, was issued a rescue medication, and came up with a plan going forward. Although this was a hard pill to swallow as parents, we have an amazing support system and we just knew it was going to be okay! At the start, David's seizures would be about once a month but would require an ambulance ride, many rescue medications, and other serious medical interventions. Needless to say, it was exhausting. We were changing medication dosing and regiment with little to no relief.

Finally, at the age of 2 years old, our neurologist referred us to the Epileptology clinic at Mott Children's Hospital since his condition was progressing and knew we needed a different level of expertise. Immediately, we did genetic testing and found a mutation of the SCN1A gene, more commonly known as Dravet Syndrome. We had read about this previously on an Epilepsy forum and we were absolutely DEVASTATED to receive this news. I should also mention that just 5 months before our diagnosis we welcomed another sweet baby into our family, Ruby.

Dravet Syndrome is a rare, catastrophic, and lifelong form of epilepsy that affects 1:20,000 to 1:40,000 people. Children with Dravet Syndrome can experience prolonged seizures, frequent seizures, language/speech delay, behavioral and development issues, sleep difficulties, Dysautonomia, and other issues. As David's mom (and the stay at home parent), learning to navigate this diagnosis became my full time job. After learning what we needed to know about Dravet Syndrome and going through a bit of a mourning period, we came up with the motto "one day at a time" and that's exactly what we do! Since David's diagnosis, he has struggled with sensory issues, disordered sleep, a bit of a speech delay, and frequent seizures.

Along with therapies and support, those issues don't hold a candle to what this boy CAN do. He loves to play golf, play with friends as well as his little sister AND brother, is doing great learning at home with mama as his teacher, and just charms everyone he meets with his sweet personality. Now that Davey is 5 years old we are seeing his hunger for independence. As parents, we are struggling to find ways to allow him freedom while also keeping him safe. A service dog from 4 Paws for Ability will help to guide him along with alerting us when a seizure is happening so we can get to him and administer rescue medication. We are so excited to see how this dog will bless our family and allow David to experience life to the full!

Thank you for all of your support!

For more info on Dravet Syndrome visit www.dravetfoundation.org