2015 | Breccan’s Story

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 in 2015 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.

State of Science

In 2015, increased recognition of Dravet syndrome led to more focused funding. NIH grants started supporting research on the molecular mechanisms and potential treatments for SCN1A mutations. This included basic research and early-stage clinical investigations.

So far in his life, Breccan has had 64 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 Dravet Syndrome Foundation (DSF) and its families that our children are finding better care and more life options than ever before. DSF has also made incredible progress on FDA approvals for the medications 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). 

Minimal Aesthetic Story Highlight Covers Your Story 8

Before DSF: Breccan’s family faced the frightening uncertainty of navigating Dravet syndrome after his diagnosis, relying on limited resources to manage his seizures.

With DSF: Thanks to DSF’s advocacy and advancements in treatment options, including the approval of medications like Fintepla and Epidiolex, Breccan’s seizures have reduced, allowing him to thrive and bring joy to those around him.

Hope for the Future: The Shaughnessy family hopes for even more treatments that protect their children’s vibrant personalities and improve their quality of life.

Breccan is now 9 and he has the biggest personality and he loves to make people laugh. His very favorite things to do are exercise, swim, play basketball, play with his castle and play legos. And he loves to take everyone’s order and make you dinner :). Currently, Breccan is in 3rd 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.

#15YearsofProgress #15YearsofDSF

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