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As 3rd Pediatric Cancer Awareness Walk nears, the story of ‘Baby Shawn’ and the inspiration he has given others to fight to defeat DIPG remains powerful.

 

By: Nicholas D. D’Angelo

Managing Editor

Can you imagine what it would feel like to hear from a doctor that your child has cancer? What about hearing that not only does your child have cancer, but that he/she has only six – twelve months to live?

As hard as it is to think about, that’s the feeling parents of children with DIPG (Diffuse Intrinsic Pontine Glimoma) are faced with when their children are diagnosed. It’s what Nicole Vathy felt when her four-year-old son Shawn was diagnosed in August of 2015.

DIPG is a devastating pediatric brain tumor that occurs on the pons of the brainstem, which is the oldest and most primitive part of the brain. The brainstem is also known as the ‘stem of life’ because its job is to make the body survive. Some examples of brainstem functions include controlling breathing, heart rate, swallowing, motor control, and consciousness.

 

 

Unlike other cancers, DIPG cannot be removed and the effects of radiation therapy only temporarily alleviate symptoms. There is no cure and the median survival period after diagnosis is nine months. Only 1% of children live beyond two years after diagnosis and less than half of one percent live beyond three years. Overall, the survival rate is 0%.

 

 

DIPG does more than take the lives of children; it tortures them. Children become paralyzed, lose all motor function, lose the ability to swallow, to speak and even to see; all the while remaining completely aware. As one pediatric cancer researcher noted, “you can hear the agony through their eyes.”

The problem is pediatric cancer research is terribly underfunded. In fact, it is the least funded type of cancer research.

 

 

Shawn, who has garnered the nickname “Baby Shawn” over the past several years, just passed the three year mark after he was diagnosed with DIPG on August 15th, 2015. Little did Shawn or Nicole know that his diagnosis, energy, and infectious joy would evolve into a movement for increasing awareness for pediatric cancer in Western New York. Nor did they know Mike Espositio, current teacher at Niagara Falls High School and well-known basketball coach, who would become part of their family.

If you ask Baby Shawn though, it really all started with the Golden State Warriors and Steph Curry.

“I was reading a pamphlet of bible verses and the first line in it was, ‘you have the power to change someone’s world today,’” said Esposito. “Coincidentally or not, it was later that day I learned about Shawn, his diagnosis with DIPG, that it was terminal, and how his idol was Steph Curry of the Warriors.”

“I immediately sent an email to Steve Kerr, Golden State’s head coach, and told him that there’s this kid, he’s terminal, his idol is Steph Curry, and is there any way you could set up a meeting with Curry? He literally emailed me back in an hour – it could have been less than that – saying yes, of course, no problem, we’ll take care of it.”

As it turns out, the trip did happen; but nothing like they expected.

“We’re in the pool at the hotel which, luckily, was only about a ten minute walk from the arena,” said Esposito, “when we got a call from the PR guy saying that Steph wanted to meet with Shawn before the game. So we raced out of the pool, over to the arena, and onto the court where Shawn was able to watch Steph take shooting practice. Afterwards he called us over into the locker room area, took his shoes off, signed them, and gave them to Shawn.”

 

 

Altogether, Steph spent about an hour before the game, as well as an hour and a half after the game, with Shawn.

“It was so cute how he had done it,” said Nicole. “Steph took both Shawn and his brother into the locker room. At one point we were outside talking with Steve Kerr and out of the locker room comes Steph, Shawn, and Mikai saying that they’re trying to find Klay [Thompson].”

“After the game we went back down onto the court and Shawn went into the locker room,” said Esposito. “After a little while Nicole told me to go in and check on them so I went in and found Steph, Draymond [Green], Shawn, and Mikai laughing and eating dinner.”

The trip is evidence of how true the bible verse Esposito had read was. He did, in fact, have the power to change someone’s life; and he did.

But that was only the beginning.

Esposito organized the first Pediatric Cancer Awareness Walk in 2016, which has become a staple since then. The walk raised $6,800 in 2016, $7,500 in 2017, and he is hoping to exceed $20,000 in 2018.

All of the funds raised go to two organizations that devote all of their resources to pediatric cancer research: PUNT, which was started by former Buffalo Bills Punter Brian Moorman and Go4TheGoal.

A key difference between PUNT / Go4TheGoal and other cancer research organizations such as the American Cancer Society (“ACS”) is that a very small percentage of money donated goes toward administrative fees, whereas 40-45% of the funds raised for the ACS goes towards salaries and other overhead costs.

Pediatric cancer only gets 4% of all cancer funding by the federal government, and that’s for all types of pediatric cancer not just DIPG. In fact, DIPG gets less than half of one percent. The same treatment that was used on children in the 1970’s is still being used today in 2018.

Esposito even went so far as trying to convince the NFL to ‘Go Gold’ for a weekend to raise awareness for pediatric cancer research.

 

 

“We got 7,000 letters from all over Western New York asking Roger Goodell for the NFL to go gold for one week during the NFL season,” said Esposito. “We actually met Roger Goodell in NYC and although we didn’t get a weekend specifically for pediatric cancer, I think Shawn and the letters made a difference because the NFL now does something called ‘A Crucial Catch’ where they raise awareness for a variety of cancers including pediatric cancer.”

Baby Shawn’s story is so much more than just being someone to beat the odds. It’s of bringing people together.

“I don’t think people understand how important it is to get involved and support pediatric cancer research,” said Vathy, “and the biggest reason for that is we aren’t made aware of pediatric cancer, DIPG in particular, like we are breast cancer. My seven-year-old knows to wear pink during a football game in October. It needs that kind of recognition.”

Through all of his trips to the hospital, two stem biopsies, over thirty rounds of radiation, countless MRI’s and never-ending bloodwork, “he’s never cried. He’s never complained,” said Vathy. “His strength is infectious. It makes you never want to give up.”

 

 

The 3rd Annual Pediatric Cancer Awareness Walk is taking place on September 1st, 2018, at the Niagara Falls State Park where the Maid of the Mist and Trolleys are. Check in and registration begin at 6:30pm with a formal program starting at 7pm.

Baby Shawn, Nicole, and Mike continue to search for people to join the walk as well as sponsors. Registration fees, which include a pair of golden laces, are as follows:

 

FREE for children under 7

$5.00 for students ages 7-16

$20.00 for adults

$65.00 for a family

 

Sponsorship levels are:

 

Contributor: $100.00

Silver Level: $250.00

Gold Level: $500.00

Presenting Sponsor: $750

 

If you have any questions, call Mike Esposito at (716) 579-3748 or visit Baby Shawn’s Facebook page for event details: https://www.facebook.com/shawnkennedyjr.