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Young Parry Sounder Making his own Miracles

August 6, 2014

Posted in: Uncategorized

Steven Shurr an ambassador for this year’s Miracle Treat Day

Steven Shurr, 9, smiles with a smoothie following abdominal surgery this past winter.

steven

Parry Sound North Star

By Stephannie Johnson

PARRY SOUND – To look at nine-year-old Steven Shurr, you wouldn’t think that he was anything other than your typical boy.

He loves Spiderman, Superman and Minecraft and, of course, ice cream.

On a cool late July afternoon, Steven and his mom Carrie are enjoying lunch inside Dairy Queen ahead of the restaurant’s annual Miracle Treat Day in support of Sick Kids Hospital. The Shurr family is a big supporter of the event, and with good reason.

With brown eyes wise beyond his years, a remarkably positive attitude and a quiet bravery you would never know that Steven lives with Myelomenigocele Spina Bifida.

Spinal Bifida is a developmental congenital disorder cause by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unattached and open. In this type of spina bifida the unfused portion of the spinal column allows the spinal cord to protrude through an opening. The menigeal membranes that cover the spinal cord form a sac enclosing the spinal elements.

“I was just nearing the end of my first trimester when I found out that there were problems,” said Carrie Shurr, Steven’s mom. “I went to Orillia and they pretty much told me to abort.”

Shurr said she asked for a second opinion.

“We were sent to Mount Sinai in Toronto, where they actually gave us some hope,” she said.

Yet Shurr and her husband knew their son would be born with Myelomenigocele Spina Bifida as well as hydrocephalus.

Hydrocephalus, also known as water on the brain, happens when there is an abnormal accumulation of cerebrospinal fluid in the ventricles or ventricle of the brain. This can cause increased pressure inside the skull.

On October 26, 2004 at 6:05 p.m. more than two months early Steven was born at Mount Sinai.

“They put a shunt in his head when he was just a couple days old, so we spent over a month in the neonatal intensive care unit. The shunt is in the back of his head and it comes down under the skin and it drains all the fluid into his belly,” said Shurr.

“When they closed up the spine when he was born, all that fluid can no longer go through that part in the spine, because of damage and it goes back up into the head and the pressure accumulates. They put a shunt in there to take the pressure off his brain.”

Steven was two weeks old before Shurr was able to hold him.

“The first time I held him he was full of tubes and wires. He had a feeding tube, but I can still remember the first time I held him – skin on skin. I can still feel him on me,” she said. “When I held him and realized he was alive and doing okay, it was an amazing feeling. I’ll never forget it.”

Steven is on his second shunt that was installed about a year and a half ago, because the old one broke, Shurr said.

“He’s had four brain surgeries since he’s been born, he has orthopedics, he’s had both feet reconstructed. He’s had abdominal surgery and possibly has another brain (surgery) coming up now because they figure there’s some tethering going on in the spine. “

Listening to his mother rhyme off all of his physical challenges, young Steven shrugs, smiles and says, “Oh well, you do whatcha gotta do.”

Shurr becomes misty-eyed when talking about her only son.

“I look at my little boy now and what a miracle he is and what a blessing he is to everybody that comes across him. He’s opened up a lot of people’s eyes. You don’t take the little things for granted,” she said. “He’s a very tough kid. He’s gone through a lot in his nine years of life. He’s had so many surgeries, so many tests and MRIs, been poked and prodded.”

Shurr said they are regular visitors of not only Sick Kids Hospital in Toronto, but also of the West Parry Sound Health Centre, as Steven often runs into complications. Shurr says Steven can have spells of good health, before he comes down with severe migraines, urinary tract infections or stomach issues.

“He’s a pretty caring child. He’s very empathetic and nurturing to other children, especially those who have issues. His teachers just all fall in love with him,” she said. “He goes through moments saying that ‘it’s not fair.’ When he sees other kids having a normal child life and he’s spending time in hospitals. But, I call him brave. I couldn’t imagine myself going through what he has.”

Shurr said they have done fundraisers for spinal bifida in the past, but this year they want to support Dairy Queen’s Miracle Treat Day on August 14.

“Sometimes even now, when I see him walking, I get emotional. Because he was never supposed to walk and he’s walking and he’s going to school,” she said. “I watch him march up the school bus steps or run through puddles outside and I just cry. I was told he would never walk, and I wanted to desperately to see him run through a puddle and get dirty and I still get teary-eyed thinking about all those little things. Watching him feed himself for the first time. Watching him go through all these surgeries, I think each time it’s going to get easier and it doesn’t. I think it makes him braver and tougher as a kid – he’s a miracle.”

Steven pipes up with a wide grin, “And nine years later here I am!”

“Yes, here you are…very loved,” Shurr said with a smile.

On Miracle Treat Day (THURSDAY, AUGUST 14TH) $1 or more from every Blizzard sold goes to Sick Kids Hospital to help care for patients like Steven.

 

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