#RareDeseaseDay I would change his circumstances in a heartbeat but I would NEVER change him. Forever in awe of this rare boy of mine and thankful for all he has taught me over the past 4 years. 🦓💜🦓#LightUpForRare #infantilespasms #SCN3A #FCD #hemispherectomy

3 years since that gloomy April morning when I handed my baby over to a team at UCLAMattelChildrens led by Aria Fallah MD, MSc & prayed that #hemispherectomy would free him from seizures. While #hemiversary looks different this year, we would still do it all again without question. #EverettStrong💜

🖐🏽 FIVE…one whole hand! Happy Birthday my sweet boy. Another birthday spent in the hospital UCLAMattelChildrens, but we are trying to make the best of it. I love you my little man, you’re my favorite in all the lands. 💜 #happybirthday #five

3 1/2 years ago Everett underwent #hemispherectomy to stop his #seizures. Now as I train to run a #marathon, I am raising money for Pediatric Epilepsy Surgery Alliance to help get kids to #epilepsysurgeryevaluations. Click the link to learn more about our story or to donate. p2p-usa.keela.co/give-for-hopet…

Picture 1: the day we said yes to #epilepsysurgery Picture 2: 4 days later after his #hemispherectomy. Neurosurgery saved our son from relentless seizures, now we’re working to raise $ to open the door for other kids to have the same opportunity. p2p-usa.keela.co/give-for-hopet…

Also, thanks in large part to a very generous donor, my original $5,000 goal was met and exceeded in under 24 hours! 😳 why not shoot for the stars and push for $10,000 by December 3? This is LIFE CHANGING stuff for kids suffering from #refractoryepilepsy p2p-usa.keela.co/give-for-hopet…

Spent yesterday with Pediatric Epilepsy Surgery Alliance at Epilepsy Awareness Day at Disneyland Resort and spending today and tomorrow at the happiest place on earth. Not a bad way to spend Halloween 🎃 and kick off Epilepsy Awareness Month. #epilepsyawareness #epilepsysurgerysaveslives

Epilepsy surgery shouldn’t ever be looked at as a “last resort”…we need to change this outdated stigma around #epilepsysurgery and instead view it as a life saving medical treatment for kids with #medicallyintractableepilepsy. #stopthedelay #epilepsysurgerysaveslives

I 💜 NY #epilepsyawareness

Running #TwoCitiesHalfMarathon tomorrow and since the race takes place during #epilepsyawarenessmonth, I obviously had to add some purple to my bib. Tomorrow is for my boy & all his brave warrior friends who battle the #electricdevil every day. #foreverett #epilepsyawareness

#26point2for1in26 Months of training and hundreds of miles in the books = CIM is Sunday, so there is still a little bit more time to raise money for Pediatric Epilepsy Surgery Alliance epilepsy surgery evaluation scholarship. Share/click the link & let’s get to $10k by Sunday! p2p-usa.keela.co/give-for-hopet…

Tomorrow I will officially become a #marathoner 🤯 #26point2for1in26 #runCIM

No matter how many times I’ve handed him off to a surgeon or to go under anesthesia, it never gets any easier. 💔 #ucla #cerebralpalsy #hipdysplasia #hemiepiphysiodesis #epilepsy

Kids can’t go to school. Believers can’t go to church. Families can’t go to the grocery store. Friends can’t go to a concert. And now fans can’t go to a SUPER BOWL PARADE without the real fear of being a part of a mass shooting in America. WHAT ARE WE DOING?

4 years since a day that changed our lives forever. Epilepsy surgery truly does save lives & this boy is proof. Forever grateful to the team UCLA Health and Aria Fallah MD, MSc for giving our boy his shot at #seizurefreedom Happy 4th #hemiversary bubs, we love you! #hopeinonehemisphere

Some people will still try and say that global warming and climate change aren’t real…meanwhile it’s 114° in the shade in CA! 🥵 these temps are scary for so many reasons…

California ➡️ Boston! Looking forward to making memories, catching a Red Socks game at Fenway and spending a few days surrounded by other #epilepsysurgery families at Pediatric Epilepsy Surgery Alliance’s family conference!

Typical touristy business…Red Sox game and tossing tea into Boston Harbor. Thankful to Pediatric Epilepsy Surgery Alliance for having their family conference in such a cool city this year.

Headed home after a truly amazing week in Boston. So much wonderful learning at the Pediatric Epilepsy Surgery Alliance mixed with some fun sightseeing and delicious food. Our hearts, minds and memory banks are so full. #epilepsysurgerysaveslives #Boston2024