“If we hide it because we think there is something wrong with it then how can we expect others to be open to understanding it.”
Peter was born in Toledo, Ohio. In 2006, he moved to Georgia with his family; Mom Ivonne, Dad Michael and older brother’s Adam and Rafael.
In September of 2008, at the age of four, Peter’s went in to cardiac arrest. His heart stopped beating and they began resuscitative efforts. After running numerous tests including a spinal tap, he was diagnosed with meningoencephalitis (meningitis and encephalitis). He started having seizures on September 28th. They thought the seizures were due to the rare condition and would subside when it did, but that wasn’t the case. Peter was diagnosed with epilepsy on the September 30th and he continues to have tonic-clonic, simple partial, complex partial, absence and myoclonic seizures.
On April 24, 2010 he had a tonic clonic seizure that lasted throughout the night. He was in status epilepticus. He was stabilized and the seizure stopped. An MRI and CT Scan showed lesions on Peter’s brain. The meningoencephalitis had physically damaged the brain tissue in his left temporal lobe. He was subsequently diagnosed with epilepsy.
In September 2011, at the age of seven, Peter had a left temporal lobectomy. The surgery was not successful so in May of 2012 doctors performed a left side craniotomy to remove more tissue. This too proved unsuccessful. In December of 2014 Peter had shallow electrode surgery. Doctors were trying to pinpoint exactly where the seizures were originating. In April 2015 they did deep electrode surgery to pinpoint them further. As a result, a week later another craniotomy was performed, going even deeper into the brain to remove affected tissue.
It took several years for doctors to diagnose Peter with epilepsy. They kept telling his parents he would get better soon, but he didn’t. In fact, he was getting worse with the seizures increasing in frequency. At one point a doctor took him off his anti-seizure medication because the infection had cleared. Peter immediately started having seizures again so he was put back on the medication and has been on it since.
They visited many doctors in Savannah, Atlanta and Augusta, Ga. trying to find answers as to why they hadn’t subsided. Finally, a pediatric neurologist told them that Peter’s brain had calcification’s due to being in status epilepticus. He, in fact, has intractable epilepsy.
Peter has been through more in his few short years than most will experience in a lifetime. Mom says, “Despite all the challenges he’s faced; he’s still a happy, loving fighter.” He played baseball and soccer prior to his surgeries. Instead of giving up on everything, he traded those for playing the piano, running track, singing in the choir and swimming. He loves school and hates when he has to miss.
He is in IEP classes and has some learning difficulties. He has trouble finding words to express himself and his memory issues make it difficult to remember dates and facts in classes such as English, Social Studies, History and Writing. However, he loves Math and does well in it. His teachers love him because of his positive attitude. But, one of his teachers thought Peter was being defiant when she asked him to do something and he didn’t. Ivonne had a meeting with her and explained that Peter was trying, but has memory issues that affect his classwork. Instances like this lead to worries about testing that is required for graduation. English, Math, Social Studies and Writing competency tests are required prior to graduating. These classes, except for Math, are where he currently struggles. And while it is several years away she can’t help but think about it.
Most of his classmates know about epilepsy, what it means and what to do if Peter has a seizure. They work hard to protect him and take care of whatever he needs, especially after his surgeries. His friends also teach other people what to do if someone has a seizure. While Peter has many friends and the majority of his classmates and friends are supportive some of them avoid him. One of his best friend’s mother approached Ivonne and told her that it was best if her son and Peter were not friends anymore. She was afraid “dealing with epilepsy was putting too much pressure on her son.” While Peter was heartbroken, he bounced back like he always does.
His determination is unending. Mom says, “he doesn’t give up and he will never give up. Whatever the future has for him, he will do the best that he can based on his ability.”
While attending camp in Georgia he realized he was independent. It gave him the biggest boost of confidence. Now everyone knows for sure he will live on his own one day. His determination is especially evident when he has a seizure and just gets back up and keeps going like it never happened. He’s not going to let anything stop him from doing what he wants to do. “He will do what he was put on this earth to do. Do we have dreams and hopes? Yes. But, more importantly we want him to be happy and have a long and healthy life.”
Ivonne wants people to know “epilepsy is not all grand mal’s.” There are other seizure types and complications that accompany the condition. Some people think they are never going to have a seizure. There is no guarantee; “just because you haven’t had one doesn’t mean you won’t.” Epilepsy is common. She wants everyone affected by epilepsy, especially parents, to know “you are not alone. Please try to find a support group. Family and support groups are important.”
She would like to see an increase in openness and willingness to talk about epilepsy. The most effective way to educate others about epilepsy is to talk about it. So many people are reluctant to talk about it out of fear, embarrassment or other reasons, yet we expect others to understand. “If we hide it because we think there is something wrong with it then how can we expect others to be open to understanding it.”
One of the things that stands out about Peter is his sense of humor. We did more laughing with him than we did talking. He is very quick witted and we love that! One day we will tune in to comedy central and there will be Peter, center stage, making us all laugh! No matter what he decides to do we know for sure nothing will stop him from accomplishing his dreams.
Thank you Ivonne for sharing Peter’s story with us! You are both Epilepsy Warriors and it’s an honor to put you in the Purple Friend Spotlight! Keep shining!!!
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