ESTEVAN - Knox York is a 2 1/2-year-old boy from Estevan who has been through a lot in his young life.
In a letter sent to the Mercury, his mother Taylor and father Jake said that at eight months of age, they noticed that Knox’s eyes began to water and roll to the left, at which time he was absent for a few moments before coming to. In the following days and weeks, his parents said there was an increase in frequency and severity in the occurrences, so they consulted a doctor and were referred to a neurologist in Saskatoon.
Over the next year and a half, they said Knox was put on seven different medications and a medical ketosis diet. He also had 11 electroencephalograms (EEGs), three MRIs, genetics testing for epilepsy and a PET scan in Saskatchewan, with no concrete answers or plan on what might be causing the seizures and what impact they were having on him.
After not getting any answers and with worsening and varying types of seizures, Knox's parents sought answers at the Mayo clinic in Rochester, Minn., from Dec. 8-14. Using the reports from previous testing, a team of neurologists were able to conclude that Knox has a dysembryoplastic neuroepithelial tumour (DNET) in his left temporal lobe, which is causing refractive focal epilepsy.
"Larger seizures are crossing into the right hemisphere and causing loss of function in the right side of his face and arm," his parents said.
Knox underwent a 24-hour EEG at the Mayo Clinic, during which he had three larger seizures and seven absence seizures. They were able to confirm where the seizures are stemming and the magnitude of the impact throughout the brain.
"The family met with three neurologists and a neurosurgeon, who shared answers and were able to bring comfort and relief to the family after experiencing so many unknowns," his parents said.
The symptoms of Knox’s seizures have been progressively getting worse, they said, even in the days since returning home. Knox has been on medication for the last year and a half and the ketogenic diet since April, which has helped reduce the frequency to seven visible seizures per night, often resulting in disorientation and vomiting.
Knox will undergo surgery at the clinic to have the tumour removed. As of the Mercury's press time, the family was awaiting a call from the neurosurgeon for a surgery date, which is likely happen before the end of the year. They are hopeful that the removal of the tumour will completely eliminate the seizures, and allow Knox to communicate, as the tumour is in the region responsible for speech and comprehension.
Taylor’s sister Brady Friess has taken on the task of helping to relieve some of the burden that the family has been facing.
“While they are thankful to finally have some answers, the road ahead is daunting. This journey comes with overwhelming costs, including medical bills, travel expenses, and time away from work. They should be able to focus entirely on their son’s health without the added weight of financial strain of finding answers outside of the country," Friess said.
She has been organizing fundraising events, from a Christmas cookie tray fundraiser that sold more than 130 trays in less than a few hours, and to his-and-hers prize raffle packages.
"We live in such a wonderful community and people have been asking how they can help," Knox's parents said.
Taylor York has been posting updates on social media to keep those thinking of and praying for Knox up to date on his journey.
Anyone who would like to help ease the burden on the family can send a donation with a kind message to [email protected].
