Stow – For the past five haircuts, a father and son didn't visit the salon until their hair reached 12 inches.
Mike Wickert and his son, Jaymes, cut their hair July 20 for National Wigs for Kids Day at Gavin Scott Salon in Stow. It has become a tradition for father and son.
"It takes about two and half years to grow past the 12 inches," Mike said.
Wickert and his wife, Peggy, live in Hudson and Jaymes lives at the Hattie Larlham Intermediate Care Facility in Mantua.
They were joined by Victoria Kaniowski, who works in the Hattie Larlham therapy department and cousin Alex, and all four donated the required 12 inches.
Hairstylist Anne Davis, who is co-owner of Gavin Scott Salon at 4960 Darrow Road in Stow, separated the hair into rubber banded sections and cut the locks. The hair is used to make wigs for children at no cost to the child or family.
After the shearing, Davis styled each of the donors' hair.
The girls in the shop donate time cutting the hair and more than 100 people donate hair at their salon each year, Davis said. They also go to the Relay For Life and cut hair. Locks of Love, another organization that makes wigs, only requires 10 inches. Donated hair can be colored but not bleached, she added.
Jaymes has been on the receiving end of care so helping comes naturally. He was diagnosed with an extremely rare and deadly disease called Neurodegeneration with Brain Iron Accumulation-Mitochondrial Protein Associated Neurodegeneration or NBIA-MPAN.
The family didn't know Jaymes had the disease until he was 8 years old and both optic nerves failed to send what Jaymes was seeing with his eyes to his brain. An MRI showed iron accumulating in Jaymes' basil ganglia in the brain, which controls all body movements.
Mike and Peggy cared for Jaymes in their Hudson home for many years as the disease progressed but reached a point where they could no longer provide the level of care required for Jaymes to be comfortable and safe.
"The caring, compassionate people at Hattie Larlham are there for Jaymes," Mike said. "We know he is getting the medical care he needs in a loving setting."
Mike said doctors had to guess when diagnosing Jaymes and he would like to see a data platform where disease symptoms would be organized, correlated and searchable for better diagnosing. The information would include the specialist and medical research related to the diagnosis for the best treatment.
Jaymes, who is now in his late 20s, is one of approximately 200 people worldwide living with the disease. He has lived at Hattie Larlham's Center for Children with Disabilities since 2014, Dawes said.
"The disease interferes with the brain's ability to send signals to the optic nerve and to the muscles and worsens over time," Dawes said.
Hattie Larlham's Center for Children with Disabilities is an Intermediate Care Facility and home to 124 children and adults with severe to profound developmental disabilities and complex medical needs, Dawes said.
It is not the same as a group home, Mike said. Jaymes requires more medical care.
The Ohio budget enacted last month includes an amendment requiring County Boards of Developmental Disabilities to include ICF options when informing families caring for people who have degenerative medical issues on top of developmental disabilities who need long-term complex care because their medical conditions render them fragile.
"For those families and patients like Jaymes it means improving the quality of life and very often extending their lives by several years," Dawes said.
Currently Hattie Larlham has a waiting list, but it will mean that families in other parts of Ohio will be made aware of care options similar to what Hattie Larlham provides at its Center for Children with Disabilities and in its Group Homes that might be available to serve them closer to home, she said.
"Jaymes is one example of a rare disease," Dawes said. "We have several individuals with unusual disorders, but also some people who have come here because of poor birth outcomes or traumatic brain injury that interrupted what might have been typical development."
Some of the people referred to Hattie Larlham are not as medically fragile and may be somewhat ambulatory and able to live in a community group setting, she said.
"But everyone at our main campus is non-ambulatory and primarily nonverbal and entirely dependent because of their significant medical complications," Dawes said.
Hattie Larlham creates opportunities for children and adults with intellectual and developmental disabilities to be active and valued members of their community. The Mantua-based nonprofit provides medical, residential, recreational and work-training services to 1,600 Northeast and Central Ohio people with intellectual and developmental disabilities. For more information, visit www.hattielarlham.org.
For more information, go to https://www.wigsforkids.org or http://www.gavinscottsalon.com/contact-us or https://nbiadisorders.org/about-nbia/mpan
Reporter Laura Freeman can be reached at 330-541-9434