Emily Benson is a normal, happy sixth grader — blessed with great spirits and big smiles, vital friendships and typically overactive thumbs. Over Christmas break she’s been sleeping late, playing video games with her brother and listening to her iPod.
“She’s into Legos and nail polish. She can hang with her girlfriends and text all day long” — as appears to be the requirement for 12-year-old girls these days, her father Eric said.
But other than attending King’s Way Christian School, Emily doesn’t get out of the house much. For everything that’s happily normal about her life, there’s this one complication: Emily was born with spina bifida and secondary scoliosis. Spina bifida is a relatively common and often serious birth defect caused when the spinal cord is not fully enclosed and protected by the sheath that’s supposed to surround it. Scoliosis is curvature of the spine.
Emily is paralyzed from the small of her back down — from the L4 and L5 vertebrae, Eric said — and so the smart and gregarious child can’t go anywhere without help. She’s got both manual and powered wheelchairs, but these don’t easily fit into the family minivan. Eric and Triann, Emily’s mother, have been obliged to lift and carry their daughter between chair and car — and then to go back to lug the wheelchair along too.
The manual wheelchair is easier to bring along but far more difficult for Emily to use; the powered one is easier but weighs approximately 350 pounds, Eric said.
Which presents quite the dilemma. Triann has had two recent hernia surgeries, and her doctor recently told her she simply must quit the heavy lifting. So the pain of hauling Emily and her wheelchair in and out of the van has been replaced by the pain of saying “no” to requests to go shopping or to the zoo or to visit friends.
Emily “wouldn’t complain, but as a parent you wonder, are you failing?” Eric said.
The family did buy and modify a number of vans over the years, but Eric said it never worked out well. It just doesn’t make sense to sink tens of thousands into a retrofit for a cheap older van without much life left in it, he said.
Freedom
All that changed Thursday, thanks to a brand new, specially retrofitted, wheelchair-accessible Toyota Sierra minivan that came to the Benson family via a $25,000 down payment made by an anonymous donor. Eric and Triann first got a phone call about the gift a few weeks ago; the down payment allowed them to get excellent terms on the $50,000 balance on a car loan.
That’s a lot to shoulder, Eric agreed, but he’s got a decent job at Wells Fargo, and Triann is self-employed. They’ve long tried to pay cash only for their expenses, but the gift of the down payment on the retrofitted van — something they never could have afforded — seems worth going into manageable debt for, they said.
So on Thursday, Emily’s 12th birthday, she and Triann emerged from a local crafts store to find they’d been ambushed by a huge group of friends who sang birthday wishes while gathered around the gleaming vehicle, which had been delivered to the parking lot. “It looks flashy, but we are not flashy people,” Eric said, sounding slightly embarrassed.
The car has an extendable ramp and an extra-low floor, allowing Emily to roll right up and into place, where her wheelchair is secured. Nothing could be easier, Eric said.
It’s nice for Emily to enjoy a little ease for a change. She has endured more than 30 surgeries, Eric said — the first two within 24 hours of her birth. There’s been everything from rods inserted into her back to help straighten it out, to shunts installed in her head to relieve pressure on her brain. More surgeries have improved her hips and lower back, Eric said. The most recent surgery, this past September, was a total spine fusion. She will never grow any taller than she is right now, Eric said.
Despite all that, the most remarkable thing about Emily is her consistent good cheer, Eric said. “Anyone who knows her will tell you she has the most amazing attitude and easygoing style, and is mature well beyond her years,” he said. “She has been such an inspiration to others thanks to her great attitude.”
“Whoever in the world put this together, we want them to know what a big deal it is for our family,” Eric said.
Many outings are now being dreamed up, to places as various as the Oregon coast, Disneyland and a relative’s cabin in Klickitat. Heck, at this point, Emily said, she’s excited just to bop around town running errands with Mom an Dad.
“We are going to get a lot of freedom out of this,” Eric said. “We’re ready for some fun.”
