Thursday, May 29, 2008

Race For CARRA is soon!

Meet the Grand Marshall of this year's RACE FOR CARRA - sign-ups are still happening for the event on June 8th! Come Join Charlotte!!! I will send out details closer to the 8th on meeting up w/ us.

Bella's big day

Bella Smario, a first-grader at Scholls Heights, will serve as the grand marshal for a 5K walk and run to find a cure for childhood arthritis


By Christina Lent
The Beaverton Valley Times, May 22, 2008


Bella Smario, a Scholls Heights first-grader, has childhood arthritis but won’t let that stop her from being the grand marshal in an upcoming 5K walk.


An exciting day is ahead for 6½-year-old Bella Smario.


The Scholls Heights Elementary School first-grader will serve as the grand marshal of the third annual Race for CARRA, a benefit for the Childhood Arthritis and Rheumatology Research Alliance.


The 5K family walk and run begins at 8:30 a.m. Sunday, June 8, along the Willamette River on the Eastbank Esplanade in Portland and around the Oregon Convention Center.


Bella thinks it’s pretty “awesome” that she’ll be the star to kick-off the event.


“I get to say, ‘On your mark, get set, go!’ – and start everything,” Bella said.


At the same time, she and her close-knit family will also help raise awareness for the search to find the cause and cure for arthritis and other painful rheumatic diseases in children like Bella.
Bella has systemic juvenile rheumatoid arthritis.


Her parents, James and Olivia Smario, first realized something was wrong with their youngest daughter in the summer of 2006 when a persistent rash popped up.


After making diet changes; switching the soaps, detergent and shampoo Bella used; and several doctors’ visits, doctors seemed to get the rash under control.


Just when the Smario family thought Bella would be fine, the Beaverton family was hit with a devastating blow.


“One day we went to pick up her sister at soccer camp,” James Smario recalled. “Bella played tag and soccer, but then wanted me to carry her because she was in pain.”


Bella spent the next three days in bed with a high fever and pain in her ankles and legs. It hurt for her to move any part of her body.


Her parents took her to Doernbecher Children’s Hospital, where she was admitted for 11 days and underwent a series of tests that eventually revealed Bella had a rare form of systemic juvenile rheumatoid arthritis.


With no known cause or cure for the condition, doctors began the process of trying to find the right combination of medications to manage Bella’s pain and flare-ups.


The next year was a tough one for Bella and her family.


“The hardest part was getting out of the hospital and seeing a change in Bella,” her father said. “She realized something was wrong and experienced some clinical depression.


“She would lay in her room. The street would be full of kids outside playing, and I’d come in and find her in her room alone. It was heartbreaking to see her not wanting to be around anyone.”
At the same time, Bella began kindergarten and found it difficult to keep pace with her young peers.


“She was in a lot of pain,” recalled James Smario.


Nearly two years later, Bella takes a combination of eight medications daily.


“We’re struggling a bit to figure out the combination that is going to work for her,” said Dr. Daniel Kingsbury, Bella’s pediatric rheumatologist at Legacy Emanuel Children’s Hospital. “She’s functioning far better, but she’s not over the hump.


“She’s a work in process. Unfortunately, every treatment has issues.”


Bella wakes up stiff and has trouble getting up and moving.


Her day begins at 5:45 a.m. when she takes her first medication in bed, sleeps a little longer and then takes a long, warm shower before heading to school.


“Some days I’m okay, and some days I’m not,” Bella said. “I sleep in when I’m hurting.”


On a good day, Bella enjoys playing outside with her 10-year-old sister Brianna, swinging, taking turns on the slide, doing activities with her Brownie Troop 1294 and drawing.


“She really enjoys swimming,” her father added as Bella listed off her favorite things. “She’s in her element when she’s in the water. She’s like a little mermaid.”


The swimming could come in handy in Bella’s future.


“I want to be a scientist,” she said. “I want to study and swim with dolphins – they’re my favorite.”


Bella’s winning personality and ability to cope with the struggles and chronic pain associated with arthritis made her an ideal candidate to serve as the grand marshal of the Race for CARRA.


“She’s a trooper,” James Smario said.


“She’s adorable,” added Kingsbury. “She’s really been dealt a difficult set of cards.


“I’m certain she’s feeling miserable quite often, yet she still embraces life.”


Debbie Wright, founder of the Race for CARRA, said Bella was the first person who came to her mind to serve as grand marshal.


“She will be fabulous,” Wright said. “Her sweet, dear, little face will touch the lives of a lot of people out there.


“I hope the experience shows her that there are so many people who really care about her and other children like her. I hope she looks out and sees all the families and people gathered who are working really hard to find the cause and cure to ease her pain and allow her to live a pain-free and care-free life. It’s going to be an amazing day.”


Brianna Smario is excited for her little sister to shine in the spotlight. She’s also looking forward to participating in the event with members of her Westside Metros’ Red Magic soccer team.


“I think it’s exciting that Bella gets to be in the front and she gets a wonderful chance to walk and have fun,” the fourth-grader said. “I think people should know that Bella’s just the same as other kids, she just has a harder time doing what other people can do.”


For more information about the Race for CARRA, visit www.raceforcarra.com.

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