Years after her death, the legacy of Shannon O'Hara lives on - KXLT - Fox 47 Rochester MN News, Weather, Sports #rochmn

Years after her death, the legacy of Shannon O'Hara lives on

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Years after her death, the legacy of Shannon O'Hara lives on Years after her death, the legacy of Shannon O'Hara lives on
ROCHESTER, Minn. (FOX 47)-- At the age of 12, Shannon O'Hara of Rochester was diagnosed with an inoperable and incurable kind of brain cancer, called brainstem glioma tumor or DIPG. But even a terminal diagnosis couldn't stop this determined little girl from leaving her legacy on our community and the world.

After fighting a nine-month battle against the disease with grace and courage well beyond her years, something good and something groundbreaking has come out of Shannon's passing.

"The day she was diagnosed, we knew it was a death sentence. There is no cure for Shannon's type of tumor and there is very little effective treatment even. Shannon was aware of that, at 12, she was old enough to know what that means," said Jen O'Hara, Shannon's mother.

It is always a struggle to find meaning in the loss of a child, the loss of a life that meant so much to so many.

Yet nothing, not even death, could stop this little girl from making an impact. Her legacy is not over, it seems it has only just begun.

Carrying on Shannon's legacy has become the life's work of Mayo Clinic's Dr. Richard Vile.

"I would not be working on brain cancer had it not been for Shannon's courage and Shannon's story," said Dr. Vile.

He received samples of Shannon's brain cells two years ago after the O'Hara family donated them to St. Jude's for further testing and research.

To give you an idea of how rare Shannon's cancer is, Mayo Clinic typically treats only 10 patients per year who have it. 

"We clearly followed her treatment through her blog. Shannon later passed away and I went to the funeral with my wife. There is nothing more that will focus your mind more than attending the funeral of a young child...after that I decided it was time to sit down and refocus the efforts of my lab towards brain cancers," said Vile.

Since the kind of cancer Shannon suffered from is relatively rare and universally fatal, a new approach to treatment was needed.

"The immune system can see these brain tumors and we can raise these immune activities against them. But clearly, in most cases, these immune re-activities are ineffective. So, what we have done is taken Shannon's cells and we have prepared what we call a library which is a whole portfolio of all the proteins that have been expressed in the tumor cells and we have cloned those proteins into a virus called VSV. When those proteins are expressed by the virus, this is a real wake-up call for the immune system," said Vile. 

These revolutionary techniques have already been tested on lab mice successfully. Now, Dr. Vile's lab has received the grant funding necessary to test those same therapies on dogs. Only after success at that stage would come human testing.

"For us, its incredibly rewarding to know that exactly what she wanted is happening," said O'Hara.

This new research has potential to change the way Shannon's cancer is treated in the future, and in the process, has changed Dr. Vile himself.

"Research is a very slow, very laborious and somewhat painful process...It is good to be refocused to what we are working towards, real patients, real families that are being impacted by these diseases," said Dr. Vile.

Shannon O'Hara was determined to live a life that mattered. When we first met her back in the spring of 2011, she told us that in her own words.

"My life is going to mean something to someone, somewhere. If it's the doctors, that they learn that they have to do this right next time or if it's my family, that I make it so many years that they are amazed that I made it that long," said Shannon O'Hara.
That dream, that wish for the future is now coming true, many times over.

"If we develop a treatment, then it will be from her, from Shannon. That's probably more than most of us can hope for in our lifetime. She will live on, and if we can be successful with this, she will have made a profound difference," said Vile.

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