June 19, 2013 - BY MEG PETERS
Loui Yakob, back, opens his Lake Orion restaurant to help the Condron family, from left, Bailey, Melissa and Eric, in Monday’s fundraiser. Photo by Meg Peters (click for larger version)
Special to The Clarkston News
While many eighth graders will enjoy the beach, sleepovers or hanging out with friends this summer, Clarkston resident Bailey Condron will lay in a hospital bed with pins in her skull.
Bailey was born with a type of dwarfism called Spondyloepiphyseal Dysplasia Congenita (SED), a condition of abnormal bone growth affecting the spine.
Loui Yakob, owner of Valentino's Bar and Grill in downtown Lake Orion, is doing everything he can to help her.
"As soon as I met her family, the little girl touched my heart," he said.
On July 15, Bailey and her mother Melissa Condron will enter Helen DeVos Children's Hospital in Grand Rapids, and both will not exit for three to four months while Bailey undergoes spinal halo traction, a procedure to reduce severe curvature of the spine.
Melissa said over the last few years Bailey has developed scoliosis, as well as a new condition called kyphosis, caused from the severity of her spinal curvature.
"Once she reached puberty the kyphosis went from last October, from 80 degrees, in eight months to 108 degrees, which has caused her body to start absorbing that portion of the spine," Melissa said.
Valentino's is throwing a fundraiser buffet benefit for Bailey, the largest fundraiser to date for the year-old restaurant, at 185 S. Broadway, on Monday, June 24 from 5-9 p.m. Half of the proceeds will go to Bailey and her family for financial support during the months at the hospital.
"I had a niece that had the same problem, so I know what her and her family are going through. My niece's wasn't as bad, and that's why I decided to do it for her," Yakob said.
With this condition, the spinal curvature worsens during puberty, and for Bailey has become a threat to her internal infrastructure. Without the surgery, the degree of curvature would continue to rise, her organs will be put at high risk, more of the spine will deteriorate, and her spinal cord could sever, which would ultimately shorten her life.
Kyphosis in high degrees not only causes back pain, but can also instigate breathing and digestion problems, heart irregularity or neurological compromise. It also causes a hump-appearance to the upper back.
Under general anesthesia, a horseshoe shaped metal bar—the halo— will be secured to Bailey's skull with four to eight pins depending on her body weight, which will aid in the even distribution of traction weight. The traction weights will be hung via a pulley system secured to a carabineer that is clipped to the top of the halo. The weights gently pull against the body weight as Bailey lies on an angled hospital bed, gradually straightening the spine.
The halo traction is the pre-surgery. The actual surgery will follow.
It will take three to four months of spinal traction for gravity to pull the spine into a straighter position. Once doctors are satisfied with the straightness of the spine, they will schedule Bailey for the next surgery.
The second surgery is needed to remove the portion of Bailey's spine affected by the kyphosis, which is currently dissolving, and replace it with cadaver bones.
"She is a very artistic child, she loves art, she loves to sing, she is extremely creative," Melissa said. Bailey goes to Sashabaw Middle School, where her condition is not very noticeable. "She likes to draw, she's a Pinterest freak, she lives on that Pinterest."
The buffet dinner, along with a spaghetti dinner fundraiser at the Knights of Columbus, 1400 Orion Rd. on June 28, are taking place to help raise $9,000.
When Melissa says she is not leaving the hospital, she means "not at all." She will be by Bailey's side as her caretaker, helping her in and out of a wheel chair to get up and anything else she needs the entire time. She will take an unpaid leave from her job at the Columbiere Center in Clarkston to do so.
Melissa's sister, Katie Kent, sent out a fleet of emails to Lake Orion businesses to see if any would donate items for the spaghetti dinner. Yakob responded to the email not only offering the pasta sauce that Kent had first suggested, but also the entire meal: pastas and salad and bread and deserts, and of course the sauce.
The family met with Yakob to go over the details of the fundraiser, and Yakob surprised them all even further.
"It was quite emotional for all of us, very overwhelming to see the generosity of people that you don't even know, and I hardly talk about it without crying," she said.
"He came out, and I was thinking, he was going to donate a little bit of something. We're going to figure out what he was donating so we could figure out the rest. He came out and met us at the table, and I said, well 'what were you kind of thinking?' He said, 'I'm going to do the whole thing.' It was unbelievable when he said that."
Yakob kept surprising the Condrons. After dinner, he returned to the table with "a very special letter for Bailey" and a check for $200. That was on top of everything. Then he left again, and came back with a desert platter that said, 'You're in our prayers."
Bailey has been in and out of the hospital throughout her life. Her first surgery at ten months old. She has been seeing a geneticist over the years, and more recently every six months in Grand Rapids.
For more info, go to the website, www.youcaring.com/medical-fundraiser/bailey-s-believers/60041.