Hope was 6 years old and lived in Apex, NC. She is survived by her parents, Mark and Rebecca, her brother, Martin, and her sister, Emily.
This is Hope's Johnston's story, as told by her father, Mark Johnston.
Hope was born on April 18th, 2002. She was a beautiful baby with a head full of dark brown hair. She progress normally up to her first year. At around a year, it appeared her development had started to slow and we suspected she was possibly even beginning to digress.
Now, it’s hard to remember Hope when she was ‘normal’. However, she was in fact a healthy child, till her disease really started to deteriorate her. At a year, she was ‘cruising’ while holding onto furniture; she could crawl and stand; she spoke many words like ‘mommy’, ‘daddy’, ‘uh-oh’, ‘no’, ‘ball’, ‘nose’, ‘good girl’, and her favorite word – ‘cookie’. One of her favorite activities was when Daddy would lay on the floor – she would make a b-line for me then climb all over me, while giggling. Before getting sick, she even began the stages of sibling rivalry with her brother. I still remember her pointing her finger at her brother and sternly saying, “NO!” in an authoritative voice. It was funny at the time. Those were great memories.
Hope started losing mental and physical skills ...
Dr. Michael Tennison
Dr. Michael Tennison is Hope's main neurologist and is the person responsible for diagnosing her. He is an excellent doctor and has been with the Johnston's through most of Hope's illness.
About Dr. Tennison
- Pediatric Neurology
- Professor
- Clinical Interests: Epilepsy in childhood, neurogenetics
- Research Interests: Treatment of Epilepsy
Dr. Kevin M. Flanigan
Dr. Kevin M. Flanigan is a specialist who has donated his time to test the Johnston family for the GAN gene, among other tests.
About Dr. Kevin Flanigan
- Assistant Professor of Neurology
- Adjunct Assistant Professor of Human Genetics and Pathology
- Neurobiology of Disease
- Molecular Neuroscience
Dr. Flanigan's primary interest is in the genetic and molecular characterization of inherited neuromuscular diseases, and in particular those related to abnormalities of the cytoskeleton. One such disorder is giant axonal neuropathy, a rare inherited disorder characterized by degeneration of peripheral nerves with giant axonal swelling full of disorganized neurofilaments.
Dr. William Jones
Dr. Jones is Hope's pediatrician.
Cary Pediatric Center
- 1001 Crescent Green Dr.
- Cary, NC 27511 USA
- Phone: 919-467-3211
- Fax: 919-467-5315
