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Tyler Foundation

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Tyler Foundation Has a Personal Story to Tell During Epilepsy Awareness Month

'Living with Half a Brain' is about a local Massachusetts boy who was diagnosed with epilepsy at 3 weeks old and due to the severity had to have half of his brain removed at the age of 15 months.

Boston, MA, November 10, 2009 --( Epilepsy is the third most common neurological disorder in the United States, 2.5 million Americans have epilepsy, with approximately 125,000 new cases diagnosed each year. Despite its prevalence, the condition is often overlooked and misunderstood.

Nobody knows the pain associated with epilepsy better then Erik and Heather Plotkin, the founders of the Tyler Foundation.

On October 19, 2005, the Plotkin’s son Tyler had a complete anatomical right hemispherectomy (they removed the right half of his brain) at Children's Hospital Boston. He was diagnosed post-surgery with hemimegalencephaly - which essentially means that one side of his brain, his right side, was larger than his left side.

“Hearing Doctors tell us that they want to take out half of our child's brain is not something you could ever prepare yourself for,” said Erik Plotkin, President of the Tyler Foundation. Tyler was diagnosed at 3 weeks old with epilepsy. By the time he was 15 months old, Tyler was having over 100 seizures per day. After months and months of trying new meds, different combinations of meds, a special diet called the Ketogenic diet, the Plotkins were faced with surgery as their last option.

This procedure called a hemispherectomy is a surgical procedure in which half of the brain is removed or disconnected. The deep structures of the brain (the thalamus, brain stem and basal ganglia) are left intact.

“The word hemispherectomy is a word that no parent should ever have to hear and the thought of removing a 15 month old's entire right hemisphere was beyond scary. How could someone live, let alone function with just half a brain?” said Heather Plotkin, Co-founder of the Tyler Foundation.

A few weeks after the brain surgery, Tyler developed Hydrocephalus, a condition resulting in a spinal fluid build-up in the right cranial cavity. A shunt had to be implanted in the right side of Tyler's skull to drain the fluid. It is something he will have to live with the rest of his life. He is currently receiving physical therapy, occupational therapy, speech therapy, hippotherapy and attends Pre-K several times a week to help him regain the skills he needs.

Almost 2 years after the surgery, the Plotkins started the Tyler Foundation. The Tyler Foundation was named after their son, Tyler. “Tyler has dramatically altered our perspective on what's really important and what's really difficult in life. It may be odd to hear that while our son has endured great challenges in his short life, that we actually feel quite lucky,” said Erik and Heather Plotkin. “Tyler's outlook went from quite bleak to quite good and we can now enjoy our son in a similar manner to those with healthy kids. We feel that our perspective of how difficult it is for families to make it through these extended hospital stays both financially and emotionally, put us in a unique position to help other families that are not as fortunate as we were to have the wonderful family and friends and the financial security to make it through such a difficult time. Because of the love and support that we received, we are inspired to reach out and help those that are not as fortunate.”

“As Tyler progressed in his therapy, he required several pieces of medical equipment, a stander, a gait trainer, a special chair, several pairs of AFO's (foot braces), and many other smaller pieces of therapy equipment. Again, fortunately we had insurance, which covered these costs. The stander would have costs us nearly $5,000 without insurance. The gait trainer would have cost us another $3,000. Each set of AFO's that Tyler needs would cost us over $1,500 a pair, and most kids require 2 sets per year as they grow. The list goes on and on.”

Today, at the ripe old age of 5, Tyler has had 20 surgeries. These surgeries include 1 feeding tube placement, 1 hemispherectomy, 2 hip surgeries, 1 shunt placement and 15 shunt revision surgeries. This is something that no child should ever have to go through. “We know what it's like to spend weeks in the hospital and the costs associated with it,” said the Plotkin’s. The Tyler Foundation focuses on those needs, and aims to help out families that are in a similar situation. One hundred percent (100%) of the proceeds from the Tyler Foundation goes to providing assistance to other families. We are fortunate that after all we have been through, and continue to go through that we can help others in a time of need.

Contact Information
Tyler Foundation
Erin Downing

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