Rare disease has family seeking aid
by WILLIAM WRIGHT, Lifestyles Editor
Apr 10, 2011 | 4317 views | 0 0 comments | 26 26 recommendations | email to a friend | print
GRAYSON HARRIS, 6, and his mother Kelly Harris will be traveling with other family members to the Rubin Institute for Advanced Orthopedics, located at Sinai Hospital in Baltimore. Grayson, seated, with his mother and older brother, Elijah, by his side, will undergo a rare medical procedure this month to reverse Perthes disease, a form of osteonecrosis of the hip that is found only in children. The family is welcoming aid from the community.
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A Cleveland mother on a mission to see her son walk and run like other children is reaching out to the community for assistance while traveling to Maryland with her child during his hip surgery.

Grayson Harris, who attends kindergarten at Black Fox Elementary, was diagnosed with Perthes disease (short for Legg-Calvé-Perthes disease), a rare condition of the hip that afflicts approximately 1 in 1,200 children. It is a form of osteonecrosis of the hip that is found only in children and causes bone death in the ball of the hip due to an interruption in blood flow.

Grayson’s mother, Kelly Harris, said a year ago her son started limping and his foot started to “turn in.” He also complained that his knee was hurting.

“He has an older brother and they rough-house a lot,” she said. “I thought they had been wrestling and maybe Elijah fell on him, so I just kind of brushed it off. Well, he complained for nearly a month and it wasn’t getting any better, so I took him to a doctor and my primary care sent me to an orthopedic — Doctor Wendell Moses in Chattanooga.

“Dr. Moses took X-rays and that’s when he discovered his hip was all broken up. The blood supply through the main artery of the hip is cut off. There’s no blood going to the hip. Without the blood supply to circulate to the hip bone, the top head of the femur collapses. That’s where Grayson is now. It’s predominantly in one hip or the other. Grayson has it in both. So his left one is starting to collapse. Dr. Moses said, ‘This is as far as I can go.’”

She was referred to the Rubin Institute for Advanced Orthopedics, located at the Sinai Hospital of Baltimore, home to some of the world’s most renowned orthopedic surgeons with state-of-the art treatment.

Grayson, 6, the youngest of five siblings, is taking a mature approach to a rare treatment called hip distraction reserved for patients who are considered high risk for treatment failure.

“They say the bone will grow back on its own but it needs help so it doesn’t grow crooked and give me a permanent limp,” Grayson said in a statement written by his Mom. “In the meantime, it’s very painful and I find it harder and harder to walk.

“Thankfully my mom and dad took me to Baltimore a few weeks ago and Dr. (Shawn) Standard at Sinai Hospital says he can fix me right up. The only thing is, me and Mom are going to have to stay up there for a month or so and it’s going to take a lot of money for that. So my mom is trying to raise money for us and any donations would be really cool.”

According to the Rubin Institute, Perthes disease is a childhood form of avascular necrosis of the hip. A rare Perthes hip distraction treatment will be performed by Dr. Shawn Standard on April 26. The success rate to date in more than 20 cases treated with this method is greater than 90 percent in the most difficult cases.

Doctors at the Rubin Institute now believe that hip distraction is as good as or better than osteotomy for treatment for Perthes. It 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.

Following surgery, Grayson will have to wear a device called an external fixator to hold the healing bones in place. Following that, physical therapy will be essential since the motion of the hip joint is the secret to success in Perthes disease.

Harris, who worked for the Department of Children’s Services in Cleveland before caring for Grayson full-time, said it’s hard seeing her son in pain and on pain pills because his mobility is limited.

“He’s in a wheelchair at school. He waddles around the house and has a walker at home,” she said. “If he does too much — by that evening he can’t move and he’s crying.”

Tearing up herself, Harris confessed, “People have been so generous and it humbles me. Some people think everyone out there is bad but there’s good people out there too. Thank you don’t seem to be enough. I’m not used to being on the receiving end.”

Although Old Pathway Baptist Church and close friends have been raising money to help the family with out-of-pocket expenses not covered by their insurance, Harris said traveling expenses and a four-week stay in Baltimore will be more than she and her husband, Eddie, can afford, but they have no choice.

Anyone wishing to send contributions to help cover the 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.