Breccan was born on October 2nd, 2014. He was a healthy, happy baby boy and developed normally for the first few years of his life.
Breccan had his first seizure at only 4 months old. He developed a fever after his first round of shots and he began shaking on the left side of his body. One of his older brothers, Caeden, also suffers from Dravet syndrome, so we immediately called the neurologist and ordered a genetic test to see if he also had the same mutation as Caeden. Unfortunately, the test came back positive but this time, we were better educated and prepared to tackle this head on.
Breccan is now 10 and he has the biggest personality and he loves to make people laugh. His very favorite things to do are exercise, swim, play basketball and dress up in any costume! Oh, and he loves to take everyone’s order and make you dinner :)
That’s today. And we cherish it because it feels like any moment that personality could be dimmed by medication or permanently damaged by Dravet.
So far in his 10 years of life, Breccan has had 68 status seizures. ‘Status’ means that the seizures don’t stop on their own. We have to give him Valium and oxygen every single time he has a seizure. Also, his seizures almost always occur at night so he has to wear a pulse ox (like you wear in the hospital) every single time he goes to sleep. Thankfully, the pulse ox goes off anytime his oxygen drops and his heart rate climbs which happens during a seizure. If it wasn’t for this medical device, we would have lost Breccan a long time ago.
Watching your child have a seizure is the scariest thing to see as a parent. But then watching them recover after a seizure can be just as terrifying. You never know if they’ll make it through, or whether they’ll have lost some speech or motor skills, or a part of their personality.
It is because of the Dravet Syndrome Foundation and its families that our children are finding better care and more life options than ever before. The foundation has also made incredible progress on approvals for medications by the FDA of Diacomit, Epidiolex and Fintepla. (Breccan is now on Fintepla and Epidiolex and they are helping reduce the number of seizures he has on a weekly basis).
Currently, Breccan is in 4th grade in a functional academics class and he is thriving! He has lots of friends and just brings life and light to every room he is in. We cherish every single moment we have with all 3 of our boys.
