Why A Nine-Year-Old's Fight Against Epilepsy Got Our Attention & How You Can Help

The family of Sean Bixler has created a GiveForward page, using a crowd funding social networking site to try to raise $50,000 from family, friends - and strangers.

You don’t need to be a mom to feel such sadness when a child is suffering, but I think, as a mom, the pain may be slightly more intense because immediately you think, “What if that were my child?” That’s what I thought when I learned about Sean Bixler, a nine-year-old boy who years ago used to live in the Manhattan apartment building I live in now with my family.

Up until two years ago, Sean was your average American boy, whose biggest challenge, according to his parents, was “deciding what to name the superheroes in his drawings.” He was the kind of kid who could tell you everything you ever wanted to know about his favorite dinosaur, but that was before the seizures, that was before life for Sean Bixler and his family drastically changed.

Learn more about Sean here:

 
The Bixlers, who also have a grown son, a college-aged son and a 13-year-old daughter, have taken Sean to doctors in three states, including a recent and expensive trip to the Cleveland Clinic, where they officially learned Sean is epileptic. The doctors said the problems are caused by a “constant electrical storm in his brain.” The treatment? They’ve prescribed a medicine and a “complicated – and expensive – diet widely used to treat children with epilepsy,” according to his parents.

“Now he can have seven grand mal seizures in a day,” said his parents on a page created on the crowd funding site, GiveForward. “On bad days, he cannot draw a circle, recognize letters or read the simplest book. Somebody has to be nearby to keep him from bumping his head in a fall."

Sean’s dad, a music professor at Bowling Green State University in Ohio, has insurance, but it doesn’t cover all of the medical bills – and all of those extra costs, such as hotel and airfare for doctor’s appointments and hospital stays, payment for qualified sitters who can watch Sean and a special diet, which has “doubled the family food bill.”

The out of pocket costs are now well over $50,000, and Sean’s mom, a Julliard trained musician, has had to cut back on her own performances to help care for Sean.  Faced with mounting costs, they’ve done what countless other families have done before them – they have shared their story on GiveForward, hoping family, friends, loved ones, and people they don’t even know will be moved by Sean’s story to help.

“One of the things we’ve learned is that GiveForward is just as important if not more important to all the friends and family who want to support their loved ones in times of need,” said Ethan Austin, co-founder and chief operating officer of GiveForward. “For all the people who ask ‘What can I do to help when a loved one gets sick?,' GiveForward provides them with an answer and a way to make a meaningful contribution to the recovery of their loved one.”

The site, billed as the world’s leading medical fundraising platform, has so far helped families raise more than $15 million for everything from expensive medicines to travel for treatment. “There are millions of fully insured, middle class families just like the Bixlers across the country who are struggling to deal with the financial toll of healthcare,” said Austin in an email Q&A. “But it’s not something we tend to talk about, and I think part of that is because most people don’t really understand how expensive it is to get sick in this country until it happens to them.”

So far, the Bixlers, who have set a fundraising of goal of $50,000, have raised more than $11,000, including an anonymous gift of $500 from someone who wrote, “Read your story on CNN. As a parent, I can only imagine the challenges you, Sean and the rest of your family must endure each day. I pray you are able to find the right treatment to fully cure Sean.”

This was someone who didn’t know Sean and who was moved to contribute. “I think strangers often donate because they can relate to the stories on the site, especially if they know someone who’s been through something similar,” said Austin.

To contribute, you can check out Sean’s page here but you can also help another way -- by sharing his story with your family, friends and followers, because someone else in your community might be moved and able to help.

With enough money and time, Sean's parents and his doctors think he can live a normal life and enjoy his childhood “before it slips away."  I’ll be hugging my girls that much tighter tonight, and yes, helping spread the word about Sean.

Kelly Wallace, a mom of two, is Chief Correspondent of iVillage. Follow Kelly on Twitter (@kellywallacetv).

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