By Valerie Rossi, Trail Daily Times Reporter
A Trail mother is raising funds and spirits for a family from Nelson who recently lost their child to a rare disease.
Jennifer Williams has created Silent Auction for the Family of Little Anaya, an online Facebook auction that touts over 130 items mostly donated from Trail businesses and residents but items also collected across the region and as far as Florida.
The response has been “awesome,” said Williams, adding the auction began Friday and closes Wednesday.
Funds raised from the toys, clothing, art and more will go to parents Camara Cassin and Brent Potts, who have yet to leave Vancouver with their daughter Solara after their youngest Anaya Cassin-Potts passed away at 27 months on November 13.
“I just thought, I don’t have money but I have time and I have love so why not do something for them,” said Williams, who just finished canvassing locally for the cause. “I just felt for them, I can’t imagine losing my own child.”
Anaya had Krabbe leukodystrophy, a brain disease that resulted in loss of motor skills, and the ability to smile, laugh, and play.
The family gave up their home in Nelson and hit the road in an RV to raise awareness but when their vehicle broke down in Salem, Oregon, their daughter’s condition quickly turned and the family was rushed to the BC Children’s Hospital.
A celebration of life will be held today in Vancouver.
“How do you not fall for this gorgeous little girl who is blind, who is immobile, who can’t even eat and is living off of breast milk and needs oxygen all the time,” said Williams. “You know that they absolutely adored her because they gave up everything for her.”
Funds raised through the auction will go to the family who is now left homeless.
Those wishing to participate in the online auction can view items in a photo album on the Silent Auction for the Family of Little Anaya page on Facebook. Bids can be made directly under the photo.
A book with some of the auction items can also be viewed at Clive’s Coffee Bar in Trail, where bids can be made and will be considered before the closing date.
Krabbe leukodystrophy causes demyelination in the brain due to the lack of a specific enzyme required to produce myelin and can strike families with no medical history of any neurological problems. Two healthy parents who both carry a recessive gene for this enzyme deficiency can produce a perfectly healthy looking newborn, who at the age of three or four months will begin showing symptoms.
In most cases a baby diagnosed with infantile Krabbe will develop normally for a few months and then lose their motor skills, the ability to hold their heads up, the ability to smile, laugh or speak, followed by loss of sight and hearing.
The outlook for kids with Krabbe is bleak, with the average life expectancy being less than two years.
To find out more about Anaya’s journey, “like” The Anaya Initiative on Facebook.