The UC Davis Leukodystrophy Clinic was recently accepted into the Hunter’s Hope Leukodystrophy Care Network (LCN) Program, making it one of only 12 Children’s Hospital LCN Certified Centers in the country.
The UC Davis LCN Certified Center provides comprehensive care, diagnostic testing and advanced treatments to infants, children and adolescents living with leukodystrophies. These genetic, progressive disorders affect the nervous system, including the brain and spinal cord, as well as other systems in the body in unique ways. There are more than 50 identified leukodystrophies, and they affect approximately one in 4,700 individuals.
“I’m thrilled that our clinic has been accepted as an LCN Certified Center,” said William Benko, director of the UC Davis Leukodystrophy Clinic and clinical professor of neurology. “This recognition highlights UC Davis as a local and national leader in managing these rare and complex diseases and prompts our own subspecialists to become leukodystrophy experts in their own field. It also means that our patients don’t have to travel far to receive specialized care.”
In addition to becoming an LCN Certified Center, the clinic received a grant of $20,000 to support Cassandra Ingemansson, family nurse practitioner and clinical care coordinator for the center.
The Leukodystrophy Care Network is a community of affected families, organizations and medical providers committed to revolutionizing the health and quality of life of individuals affected by leukodystrophies with proactive, innovative and comprehensive medical care standards and specialized centers.
“Though we are self-sustaining, all of the centers in the network are collaborative and networked together to ensure the highest quality groundbreaking care is available to all leukodystrophy patients,” Benko said.
Killian Christie, age 4, is one of those patients. He was diagnosed with Metachromatic Leukodystrophy (MLD) when he was two years old, and was referred to UC Davis after seeing doctors at Stanford University and Shriner’s Hospital.
“We first realized something was wrong when he was 18 months old,” said Josh Christie, Killian’s father. “He had trouble learning to walk, and then he just started going backwards. He lost all mobility and by the time we were able to get genetic testing, it was too late for the treatments that were available.”
Due to the many physical effects of MLD, Killian is blind and in a wheelchair. However, his parents say he’s managed to stay happy and full of smiles despite the physical regression associated with his illness.
Killian’s family is making the most of their time together by taking short trips and spending time outdoors. To help make traveling more comfortable for Killian, the family is holding a fundraiser to get a new handicapped-accessible van through the Hunter’s Hope Wish Gift program.
“We also have four daughters, and we try to spend a lot of time in nature,” Christie said. “We live in Calaveras County and Killian loves to do outdoorsy things. Even though he’s blind, his other senses are strong, and he can still experience new smells and textures outside.”
Christie said he’s focused on making the most of every moment with his family and is grateful for Killian’s care team, which includes Benko, Ingemansson and Rory Kamerman-Kretzmer, assistant clinical professor of pediatrics.
“We’re incredibly grateful for all of the doctors and staff at UC Davis,” Christie said. “They’re amazing people and they’re helping us get through this step by step. They have a passion for what they do.”
We’re incredibly grateful for all of the doctors and staff at UC Davis. They’re amazing people and they’re helping us get through this step by step. They have a passion for what they do.
Benko is optimistic about the future, and the care patients will continue to receive through the UC Davis LCN Certified Center.
“In the last five years and in the coming decades, there will be more biotechnical advances allowing for earlier intervention and modification of the course of this disease,” Benko said. “Being close to the cutting edge allows us to recognize and counsel these patients as we continue to provide patient-centered, multidisciplinary, expert care to all individuals affected by leukodystrophies.”
If you’d like to support the center, please donate to the Neurology General Support Fund and write “UC Davis LCN Certified Center” in the Special Instructions/Comments section.