Meet Abby K, Parent Mentor at Akron Children's
Abby's Story
Our son Westin was diagnosed with a rare mitochondrial disorder called Surf1 Leigh Syndrome. He was diagnosed in 2023, shortly after he turned two years old. A few concerns we had that led us to this diagnosis were vomiting and a slight delay in milestones at the time. We were referred to have an MRI done and from there genetic testing. Once we got the genetic results, Westin's Leigh Syndrome journey began, and we could not be more grateful for the Mitochondrial Center at Akron Children’s Hospital and all the care that he receives.
Westin is seen by occupational, physical and speech therapy, along with the vision center gastroenterology, endocrinology, and physiatry.
Westin is a big brother to his two younger siblings, Lyla and Nash, whom he absolutely loves and adores. He is nothing shy of amazing in every way. I could not be prouder of all he has had to overcome. With Leigh Syndrome there are a lot of unknowns, and we choose to follow Westin's lead and support him in every way possible.
I wanted to take the opportunity to be a part of the Parent Mentor Program and help or just be there for those that I can. This is a rare diagnosis and I know it can be hard to navigate. I want families and patients to know that they are not alone.
Abby is a mentor for these care services: Endocrine, Eye, Gastroenterology, Genetic Syndromes, Neurology, Palliative Care, Rehab
