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Jayda SuttieCanadian girl with vanishing white matter disease.
Country:
 Canada |
Content:
- A Canadian Girl with a Rare Vanishing White Matter Disease
- An Incident Triggers a Life-Altering Seizure
- Hospitalization and the Diagnosis
- Vanishing White Matter Disease
- Symptoms and Challenges
- The Nature of the Disease
- Current Challenges and Treatment
- A Medical Mystery and a Lack of Awareness
- Feeling Isolated and Misunderstood
- A Glimmer of Hope at a Cannabis Convention
- Raising Funds and Connecting with Others
- A Mother's Unwavering Determination
A Canadian Girl with a Rare Vanishing White Matter Disease
On June 3, 2016, 10-year-old Jayda was running in a gym class when she accidentally collided with a boy. "She was so curious and eager to learn," stated her mother, Linda.
An Incident Triggers a Life-Altering Seizure
After the collision, Jayda suffered an extensive epileptic seizure that lasted for 20 minutes. This devastating seizure left her unresponsive, with uncontrolled muscle spasms and convulsions. Paramedics rushed Jayda to a hospital in Vancouver, Canada, but doctors were initially unable to determine the cause of her condition. "The fact that nobody could give us any clear answers was a huge shock," recalls Linda.
Hospitalization and the Diagnosis
For three days, Jayda remained unconscious in the intensive care unit, strapped down to prevent self-harm. "That first night, she would wake up every three to five minutes, screaming," said her mother. After Jayda regained consciousness, doctors realized the extent of the damage caused by the seizure. She had lost most of her motor functions, including the ability to walk, hold objects, and even support her head. Jayda also could no longer speak. She spent a week in the hospital and then five weeks in therapy, relearning how to walk and talk.
Vanishing White Matter Disease
It wasn't until August that doctors were able to diagnose Jayda with vanishing white matter disease. This rare disorder results in a gradual loss of function in the central nervous system. Linda reports that her daughter's illness is in the advanced, untreatable, progressive stage.
Symptoms and Challenges
The disorder has presented various symptoms in Jayda, including severe hearing loss. This summer, she began losing her ability to hear low tones. Jayda also overheats more quickly, likely due to alterations in her body's core temperature. Further risks include potential fever-induced inflammation of the brain and the possibility of another seizure.
The Nature of the Disease
Vanishing white matter disease occurs when the fatty brain insulators that protect the electrical "wires" in the brain begin to deteriorate. It is a specific form of leukodystrophy, a genetic disorder affecting the brain, spinal cord, and peripheral nerves. "Often, it is a stressor event that triggers the disease to present," explains Dr. Ali Fatemi, chief of neurogenetics at the Moser Center for Leukodystrophy at Kennedy Krieger Institute.
Current Challenges and Treatment
Today, Jayda uses orthotics on her legs, but she needs new braces because doctors worry that her weight distribution will affect her knees and hips. She tires quickly and experiences headaches with minimal exertion or focus.
A Medical Mystery and a Lack of Awareness
Jayda has had no further seizures since the initial incident, which is a positive sign that her disease is progressing slowly. However, she and her mother remain in limbo as more research and knowledge are needed about this rare condition. Dr. Fatemi estimates that vanishing white matter disease occurs in about 1 in 100,000 children, with only 300-400 known cases worldwide.
Feeling Isolated and Misunderstood
Jayda has watched others raise funds for cancer and other better-known illnesses and has been saddened by the lack of attention her condition has received from charities. "We felt so alone," says Linda. "We felt like there was nobody there for us."
A Glimmer of Hope at a Cannabis Convention
In June 2017, Linda and Jayda attended a Cannabis Convention to learn about alternative treatments. At the event, they found a community of people who were empathetic and understanding. "These were the first people who actually listened to our story and wanted to help," says the mother.
Raising Funds and Connecting with Others
Through the CannaKids initiative, the mother and daughter were invited onstage to share their story with an auditorium full of attendees. This resulted in over $10,000 being raised for Jayda's treatment. The convention also connected them with researchers studying vanishing white matter disease and others who have been affected by it.
A Mother's Unwavering Determination
Today, Linda is determined to ensure that her daughter has the best possible life. She wants to make Jayda's dreams of meeting Ellie Goulding and appearing on "The Ellen Show" a reality. "You just don't know what tomorrow holds," she says. "But I will never, ever, give up on my child."
