When Aimee Rubio saw the eyes of her five-month-old son Aidan roll back into his head and watched him start foaming at the mouth, she rushed him straight to the emergency room.
The doctors, however, couldn’t find anything wrong with the infant and weren’t able to come up with an explanation for the episode, leaving the new mother feeling frustrated and helpless. And that feeling only grew stronger when he slipped into what would eventually be diagnosed as another seizure right there in the emergency room – prompting an emergency ambulance trip to Oakland’s Childrens Hospital.
Aidan, doctors would tell Rubio, was epileptic.
The revelation kicked off what would be years of experimenting with every epilepsy and anti-seizure medication under the sun to try and control the regular seizures that plagued Aidan – seizures that could occur up to 20 times a day. Nothing, it seemed, could get the neurological disorder under control.
And by this time, the seizures were taking their toll on Rubio’s young son in more severe ways.
“As he became a toddler, he couldn’t walk and he couldn’t talk and he ended up being diagnosed with a developmental delay and labeled mentally retarded,” Rubio said. “We enrolled him in preschool at McFall here in Manteca, and after he underwent a lot of tests at Children’s Hospital they referred us to UCSF.
“They told us that he was a brain surgery candidate based on the tests and that there was a chance this could be brought under control.”
The surgery, however, wouldn’t be an easy one.
First the doctors had to take a piece of his skull off and lay a grid over the portion of his brain that they thought was causing the problems. Hooked up to wired electrodes that protruded from his head, the three-year-old had to stay like that for six days in the Intensive Care Unit before they captured enough data to proceed with the rest of the process.
But by removing the “hot spot,” Aidan was left with a physical handicap as well – forcing him to stay at Children’s Hospital in Oakland for another two months while he rehabbed and learned how to walk again.
Given his young age, Aidan was able to rebound quickly and his brain was able to remap much of what had been affected by the seizures and the surgery. Within months he was singing and talking and carrying on and things that used to baffle him started making sense. Before Aimee knew it, he was leaving McFall and enrolling into a regular kindergarten class.
“Nobody ever thought that anything like that was possible,” Rubio said, holding back tears. “The promises the doctors gave us were, if anything, they could get the seizures under control. That’s all that we were looking for – he was going through medications faster than the FDA could approve them. To get off drugs completely and to see him with the cognitive function of a regular seven-year-old – that was simply amazing.
“I find that we’re blessed today in our lives. From the doctors and the nurses to the teachers at McFall and Woodward. Aidan had his individual education plan meeting not long ago, and they assessed him in all areas and every test came back average. He’s among his peers. I’m so happy to hear those words – that he’s an average boy. He couldn’t be happier.”
And now Rubio is looking to pay back the support she received from the organization that helped her keep the faith throughout one of the most trying things any parent can go through – the Epilepsy Foundation.
It was through online networking with other parents that had children diagnosed with epilepsy that Rubio learned of treatment methods and got inspirational messages as she embarked on an uncertain journey. Today, she says, she plans to be there for other families who may be facing similar situations and scenarios so that she can help them in the trying times – knowing exactly what it feels like to be in that situation.
“There is no doubt that I’ll be working for the Epilepsy Foundation spreading awareness for the rest of my life,” she said. “I am so grateful for what they do and what they continue to do. What Aidan got was a groundbreaking surgery, and through the research that they fund and the word that they can spread he was able to get what he needed. A kid like him, born 20 years ago, wouldn’t be where he is today.
“Medical advancements are why we are where we are today without a doubt. And if I can be there for a family that’s going through something like what I went through, I feel it’s something that I have to do.”
Rubio and Aidan will join a handful of friends on Saturday, May 21 to be a part of the 19th annual Epilepsy Freedom Walk at Six Flags Discovery Kingdom in Vallejo. The fundraiser helps support the efforts of the Epilepsy Foundation of Northern California.
Those wishing to make a donation to Aidan’s Amazing E-Team can do so at http://giving.epilepsyfoundation.org/site/TR/Events/Tributes?pxfid=9431&fr_id=1060&pg=fund. For additional information about the event, visit www.norcalfreedomwalk.org.