Eastern Greenbrier Middle School student Kendra Goins is doing well after an experimental treatment at Children’s Hospital of Orange County (CHOC) in Los Angeles.
On Tuesday, Nov. 17, Goins had an infusion of RGX-111, a gene therapy drug, designed to treat a rare disease called Hurler Syndrome.
According to her mother, Cheryl Goins, the treatment took about three hours. A neurosurgeon, using a special robot, injected the dose of RGX-111 into Kendra’s brain. Representatives from the genetics team and Kendra’s genetics team coordinator were also in attendance.
“She is doing remarkable,” Goins said of her daughter.
Since Hurler Syndrome causes a person to lack the enzyme needed to break down complex sugars in the body, RGX-111 was designed as a one-time treatment that may provide a permanent source of that enzyme, Goins explained. Kendra is the first child to receive this experimental treatment at CHOC.
As expected, the family was nervous before the injection, especially since they were not allowed in the surgical room with Kendra, but a comfortable gift helped ease Kendra’s stress.
Several days before Kendra’s infusion, Fort Spring resident Cynthia Alt, along with assistance from Alderson resident Deborah Weikle, made a special quilt for her that featured a picture of unicorns—one of Kendra’s favorite things.
According to Alt, she was happy to make a quilt for Kendra and ensure that she received it before her surgery. In the past, Alt has donated quilts to organizations and people that are near to her heart including the Monroe County Animal League, veterans at various hospitals and 2016 flood victims.
Alt said she found the unicorn panel online and Weikle donated the outer border fabric and machine quilted the gift for Kendra.
“To see the picture of Kendra opening her special gift makes my day,” Alt stated.
The hospital staff at CHOC allowed Kendra to take her special quilt and a little unicorn with her, Goins said. After her surgery, a nurse gave Kendra a cat unicorn that lights up.
“She is carrying it everywhere,” Goins said.
While the family still has about an eight-week stay in Los Angeles before they can come home, they are finally able to get some rest now that the treatment has been completed.
“The love and care you feel here is unreal,” Goins said of CHOC. However, the family looks forward to their arrival home.
“I just want to thank everybody from the community for all their love and support and outreach of prayers,” Goins said. “We couldn’t have done this without them.”
Goins extended a special thanks to Alt and Weikle for “helping to make Kendra’s dream come true.”
An account is still open at City National Bank for those who wish to help the family during their California stay.
To follow Kendra’s story, visit Facebook and look for Cheryl Reed.
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