Shawna's Story

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Shawna's Story

Shawna's Story

"A Chance for Shawna" by Cheryl Edwards

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Editor’s Note:

Within days of The Hemi Foundation being on the web, we received an email from a Mother who had been searching for twenty-nine years to find someone - anyone - whose child had undergone a hemispherectomy, such as her daughter Shawna had in 1979. On July 27, 2008, Cheryl Edwards of California, discovered a link to The Hemispherectomy Foundation, and her loneliness was replaced with relief and a sense of belonging, as she realized, "We aren’t the only ones!"

We were stunned to already be fulfilling our dream - bringing hope, comfort and community to hemi families. Learning there was someone silently suffering for almost thirty years, unaware that others were having the same surgery as her daughter - was incomprehensible.

Cheryl dealt us a second surprise. Twenty-seven years earlier, she had been published in a national magazine - Lady’s Circle, for an article written on five year old Shawna’s hemispherectomy experience. Back then, this surgery was unheard of, and unfortunately, so was the diagnosis of Rasmussen’s Encephalitis. Not only was Shawna one of a very few children having this surgery, but even a proper diagnosis was unattainable.

Cheryl Edwards’ story is a vital piece of hemispherectomy history that we are honored to share with you here. The following article was published in the Lady’s Circle magazine in February, 1981.

See the links below to read the Lady's Circle article!

Forward
by Cheryl Edwards

When I wrote the story, "A Chance for Shawna" in 1980, it was solely for the purpose of bringing this surgery into the light of day and getting the message to other parents whose child was suffering from uncontrollable focal seizures. I knew it would come as news that there was something they could do. I was incredulous how unknown and unavailable the surgery was at the time. I felt God had given me the gift of being able to tell Shawna’s story so I could change that.

There was no personal computers, no Internet, and therefore no blogs to get my message across. It was just pencil and paper, and an old Selectric typewriter. It took me six months of writing and rewriting, and submitting my manuscript to magazine after magazine, before Lady’s Circle agreed to publish "A Chance for Shawna" in their February, 1981 issue.

But it wasn’t the exposure I had hoped it would be. Although Lady’s Circle was a national publication, it wasn’t Ladies Home Journal or Redbook. Unless you were a "homemaker" and big into quilting, you probably had never seen a copy of Lady’s Circle. But I sent a copy of that issue to every pediatric neurologist I had ever seen or heard about, and contacted the Epilepsy Foundation hoping they would jump on my self-appointed bandwagon. No dice. Even the surgeon who had operated on Shawna, Dr. Sydney Goldring of Washington University in St. Louis, was somewhat chagrinned to have the unwanted "publicity".

So now, here we are almost 30 years later, and my article is on The Hemispherectomy Foundation website as a piece of history and getting broader exposure than I had originally hoped. God works in his own time, I guess!

Shawna is now 34 years old. When she had the surgery they did not know if she would live to adulthood, because they had not been doing the surgery long enough to know. But live she did, and live she does now. She is a bubbly, highly active woman who lives in her own apartment with many friends and a rocking social life. She does have some handicaps, as does everyone to some degree who has had a hemispherectomy. But that has not stopped her from leading a full life. But before I get into the Shawna of today, I thought you might like to know what life was like for all of us after her surgery.