The family had to travel from Cleveland to Baltimore in April to go to the Rubin Institute for Advanced Orthopedics at the Sinai Hospital of Baltimore, where some of the world’s most-renowned orthopedic surgeons could offer Grayson state-of-the art treatment.
The inspirational youth returned to Cleveland wearing a device called an external fixator to hold the healing bones in his right hip in place. He is also taking physical therapy three times a week since motion of the hip joint is considered the secret to success in Perthes disease.
Although the family has health insurance, their out-of-pocket travel expenses, hotel stay, food expenses, copays and deductible are running into thousands of dollars, creating a steep financial hole for the family.
Kelly Harris, Grayson’s mother, said she is speechless at the support her family has received from such a generous community after hearing of their situation and reading their story in the April 10 Lifestyles section of the Banner.
“I’m at a loss for words. I don’t really know what to say. The response has been overwhelming and humbling,” Harris said. “The generosity of strangers just floors me. I cannot express my gratitude and my thanks enough. Everyone has been so generous.”
Grayson’s parents have been reaching out to the community for any support available to help their son in his quest to live a normal childhood filled with running, jumping and laughter free from leg pain.
According to the Rubin Institute, Perthes disease is a childhood form of avascular necrosis of the hip which causes bone death in the ball of the hip due to an interruption in blood flow. Grayson had to undergo a rare hip distraction treatment performed by Dr. Shawn Standard in Baltimore on April 26.
Doctors at the Rubin Institute believe hip distraction offers the advantage that it does not deform the pelvis or femur to treat the disease. It is also the method of last resort when other methods fail.
Although the bone will grow back on its own it needs help so it doesn’t grow crooked and cause a permanent limp, Harris said. So Grayson has to wear an external fixator with metal pins or screws inserted through the skin and into the bone.
“When we go back on Aug. 26 they will remove the fixator and put him in another brace on both legs for six more weeks — 24 hours a day. Then he’ll have to wear it nights only for six more months,” Harris explained. “Hopefully Grayson will be able to play spring (base) ball. That’s what we’re praying for.”
Harris said her son’s left hip is not deteriorating as much as his right, adding, “As long as his left hip remains like it is now it will be fine. If not, he’ll have to have another surgery and a fixator placed on the other side eventually.”
Since Grayson has to return to Baltimore for another surgery in August, the family is trying to raise funds to cover their out-of-pocket expenses, which will continue to increase before the entire surgery and full recovery are complete.
“We’re starting to get the bills in now for the surgery in April,” Harris said. “The hospital stay alone for four days was $38,000. That’s not including the surgery — just the hospital stay. We were in Baltimore from April 23 until May 26. The out-of-pocket expense was right at $3,000.
“We’ve also had to do some home modifications to accommodate Grayson. Since I’ve been home we’ve spent another $2,500 just trying to get things so he can get around — not to mention his physical therapy three times a week at $25 (co-pay) each visit. Plus the gas to get back and forth from Chattanooga.”
Harris said the family had to buy a new van — an expense they cannot afford — because of the need for roomy and reliable transportation.
“I had a little Dodge Caliber and the only thing that could fit in it was he and I and his wheelchair — none of the rest of the family,” she said. “It was a blessing to get this van.”
Harris, who worked for the Department of Children’s Services in Cleveland before caring for Grayson full-time, said the family is holding fund-raisers to offset some of their expenses.
“We’re having a benefit singing at Oak Grove Elementary July 23,” Harris said. “The school donated their gym to us from 5 to 9 p.m. We’re also hoping to have a silent auction.
“I’ve been trying to get in touch with businesses to donate services — something of that sort — for a silent auction. We’re still doing yard sales. People have donated generous amounts of things. I can’t tell you how much we appreciate it. There was only so much we could sell out of our house.”
The family estimates by next year their medical bills for this ongoing surgery will be in the range of $120,000, most, but not all, of which their health insurance will cover. Harris said their situation has also opened her eyes to special needs children as well as the remarkable work of caregivers.
“I never realized how much care goes into the person that’s sick. It’s like having a newborn. It’s a 24 hour thing. God bless caregivers because it’s tough,” she admits.
“We’ll leave here Aug. 24 and he’ll have surgery on the 26th. We’ll be up there a minimum of two weeks. Hopefully that will be all.”
Grayson, the youngest of five siblings, said he hurts “sometimes” but it feels much better when he sits in a recliner. When asked what is the first thing he would like to do once his recovery is complete, Grayson perked up and said, “Jump on my trampoline at Nanna’s house!”
Anyone who would like to send a contribution to help cover the Harris family’s out-of-pocket expenses can mail or hand deliver a check or money order in the name of Grayson Vaughn Harris to any Regions Bank in Cleveland. Account no. 149800825.