Our Story
Our Story
Our Story
Mavrick had his first seizure when he was 11 months old and since then has had countless seizures, ER visits, ambulance rides, PICU stays, all kinds of tests and scans and after all that he was diagnosed with a RARE form of Epilepsy, SCN8A. As if an epilepsy diagnosis wasn’t hard enough to handle. Google SCN8A….it’s heart breaking! Thankfully Mavrick is one of the less severely effected but he’s also one of very few, Less than 170 kids, in the world identified with SCN8A which can and often is Life Threatening. Thanks to medication Mavrick’s seizures are well controlled at this time and for this we are very thankful.
Mavrick had his first seizure when he was 11 months old and since then has had countless seizures, ER visits, ambulance rides, PICU stays, all kinds of tests and scans and after all that he was diagnosed with a RARE form of Epilepsy, SCN8A. As if an epilepsy diagnosis wasn’t hard enough to handle. Google SCN8A….it’s heart breaking! Thankfully Mavrick is one of the less severely effected but he’s also one of very few, Less than 170 kids, in the world identified with SCN8A which can and often is Life Threatening. Thanks to medication Mavrick’s seizures are well controlled at this time and for this we are very thankful.
When Mav was first diagnosed there was a little over 100 known cases. Today there’s around 300 known cases. Mav is still the only known case with his exact variant. We’re extremely lucky we found the doctors we did so early on and that Mav was put on the right medication. Had we not been who knows where Mav would be today. The fear of seizures and what they can and have taken from so many is real. The number of precious little ones with SCN8A lost to SUDEP is heartbreaking. This why we continue to do what we can to raise awareness and funds for SCN8A research.
When Mav was first diagnosed there was a little over 100 known cases. Today there’s around 300 known cases. Mav is still the only known case with his exact variant. We’re extremely lucky we found the doctors we did so early on and that Mav was put on the right medication. Had we not been who knows where Mav would be today. The fear of seizures and what they can and have taken from so many is real. The number of precious little ones with SCN8A lost to SUDEP is heartbreaking. This why we continue to do what we can to raise awareness and funds for SCN8A research.
9-11-2015
9-11-2015
First clusters of seizures.
2-9-2016
2-9-2016
Your son has epilepsy
3-16-2016
3-16-2016
Left UVA w a plan to wean Mav off the wrong meds and on the right one. Mav would end the next few weeks taking Oxcarbazipine only. He takes it 2x a day every day.
5-4-2017
5-4-2017
A fall ends our just over a year seizure free run. Oxcarbazipine increased.
5-5-2019
5-5-2019
TWO years seizure free! Thank God Mavs seizures are controlled. We pray everyday that they continue to be controlled.
Our
Mission
Our
Mission
Due to the lack of research and information relating to this life altering disease, Melissa and I are trying to raise funds specifically for SCN8A research and testing. Sadly, SCN8A has been linked to a high incidence of sudden unexplained death in epilepsy patients (SUDEP), so it is unclear what the overall prognosis is and why some children succumb. We are asking all our friends and family to help us deal with this emotional struggle by supporting a cause very close to us.
Due to the lack of research and information relating to this life altering disease, Melissa and I are trying to raise funds specifically for SCN8A research and testing. Sadly, SCN8A has been linked to a high incidence of sudden unexplained death in epilepsy patients (SUDEP), so it is unclear what the overall prognosis is and why some children succumb. We are asking all our friends and family to help us deal with this emotional struggle by supporting a cause very close to us.
