On March 31st, Kerri and Cam noticed a drastic change in their 3 year-old daughter, Brinkley. She was exhibiting a variety of concerning behavioural and neurological symptoms that arose out of nowhere. After many virtual and telephone doctor visits, and multiple attempts at bloodwork in Canada, they sent her blood and urine out of the country. Brinkley has now been diagnosed with both PANS and Lyme Disease. Due to the rarity of these conditions and the limitations that COVID has put on our healthcare system, they have had to find healthcare practitioners, testing, and treatments out of province and out of country. All of these expenses are out of pocket as they are not covered by our healthcare system.
What is PANS? PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, which is associated with a variety of different infections. What this means is that PANS is an infection-induced autoimmune condition that disrupts normal neurological functioning, caused by inflammation of the brain. This results in a sudden onset of Obsessive Compulsive Disorders, Attention Deficit Hyperactivity Disorder, and Motor and/or Verbal Tics. It causes a variety of additional symptoms, such as anxiety, irritability, sleep disturbances, urinary problems, anorexia/food restrictions, and mood swings/lability.
Unfortunately, Saskatchewan and all of Canada, are very limited in their capabilities to test and treat Lyme Disease or PANS. This means that there is a long road ahead for Brinkley. She is currently receiving treatment from a doctor in BC and is scheduled for a telehealth appointment with a doctor in California at the end of July. They hope that when it is safe to travel they will be able to take her to specialists in Connecticut who have treated thousands of children from all over the world who have Lyme and PANS.
Just like many other people, Kerri and Cam have been affected by COVID. Cam was laid off from his job in March and Kerri just returned to work in February after a yearlong maternity leave. But they are willing to spend whatever it takes to get Brinkley in to see specialists and receive the treatment that she needs. This means that they will be incurring massive debt as they test, travel, and treat Brinkley’s Lyme and PANS. They also hope to raise awareness about the lack of services and treatments offered in Canada, and have been connecting with families across North America to learn of their struggles with these diagnoses. Lyme and PANS are often misdiagnosed or under-diagnosed, which is part of the reason that they are so difficult to treat.
To learn more about PANS, please visit http://www.childrenslymenetwork.org/children-pans-pandas/ to watch a video that explains how PANS affects children.
Any help that you can give them as they seek treatment for Brinkley is appreciated! Thank you!
- Adam Musa
- Haley Grieman
- Emily Garcia
- Lindsey Gardner
- jordan westgard
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