A fundraiser and open house takes place in Abbotsford on Saturday, Sept. 23 in memory of a young woman who died of a rare genetic skin disorder a year ago.
Kourtney Kujawa died on Sept. 25, 2022, just five days after her 25th birthday. She was born with a disorder called epidermolysis bullosa (EB).
EB results in blistering of the skin and mucous membranes and can range from mild to fatal, causing discomfort and pain throughout the sufferer’s life.
The blisters continue to enlarge until opened, destroying the outer skin as they do so. They heal with scarring, faintly resembling burns, and can cause severe deformity in parts of the body.
Kourtney’s condition progressed to the point where she developed skin cancer and required the amputation of her right hand.
She had numerous surgeries over the years to help her maintain hand function and open her mouth, and required the use of a wheelchair.
But her obituary states that this didn’t slow her down.
“She lived a life of pain; however, it did not stop her from achieving dreams and goals,” the obituary states.
Kourtney graduated from Abbotsford Christian School in 2015, and loved to travel. Her favourite destination was Disneyland, which she visited eight times.
She also loved going to church and conferences, and her family says it was her faith that kept her going through difficult times.
Kourtney was also the inspiration for a new business venture. In late 2019, she was suffering pain in her knees that was so severe that the pressure of applying cream or coconut oil was unbearable.
Her mom, Janelle, developed a coconut-based spray that was soothing for Kourtney and pleasing to her senses.
They decided to turn the product into a business called Koko & Shae – “Koko” after Kourtney’s nickname and “Shae” after her younger sister (who does not have EB).
The business (kokoandshae.com) now sells several products, including after-sun skin care, Kokonut Oil, foaming hand soap, bar soap, body butter, shaving cream and deodorant.
The family, also including dad Todd, is carrying on the business in Kourtney’s memory.
Kourtney died in Abbotsford Regional Hospital after a three-week battle with a skin and blood infection related to her EB.
Koko’s Memorial Fundraiser takes place Sept. 23 from 11 a.m. to 3 p.m. at 34709 Immel St. The event includes food, drinks, a silent auction, face-painting and more.
The family is also encouraging donations in Kourtney’s memory to the organization DEBRA Canada, which provides support for families affected by EB and raises awareness of the condition. (Visit debracanada.org.)
Donations can be made at bitly.ws/TYxr
Kourtney was the recipient of funding through the organization for such things as bathroom renovations, modifying the family van into an accessible vehicle and installing a stair lift.
Her family also encourages plasma donations at Canada Blood Services (CBS). (A plasma donor centre is located in Abbotsford at West Oaks Mall.) While in hospital last September, Kourtney received 15 units of blood and plasma.
Her sister, Shaelyn, now works at CBS.
Donated items would also being gratefully accepted for the silent auction at the open house. Anyone who can help, or wants more information, can email Kokoandshae@gmail.com.