Emma Shingleton was diagnosed with a rare genetic condition earlier this spring. Her family is hosting a fundraising event at Sun Peaks Resort near Kamloops in August to raise money for research.
Image Credit: SUBMITTED/Amanda Burritt
June 27, 2021 - 9:31 AM
Amanda Burritt and Jaime Shingleton, formerly of Kamloops, have been on a challenging life course since their baby was diagnosed with a rare genetic condition earlier this spring.
The couple left their home in Kamloops and moved to Calgary for advanced therapy options for baby Emma.
This August, the family is returning to Kamloops to host a fundraising event at Sun Peaks Resort called Sun Peaks Scavenger Hunt: Emma’s Search for a Cure. Funds will be going toward research to find a cure for Kif1a associated neurological disorder.
“Emma was diagnosed with Kif1a associated neurological disorder in February 2021 after eight months of diagnostic testing,” mother Amanda Burritt explained. “It is a genetic neurodegenerative disorder and so far has affected Emma in a number of ways. Because of this disease, Emma is blind, has low muscle tone, poor balance and is globally delayed. Our days are spent doing therapy trying our best to catch her up to her peers while praying that nothing more gets taken away from her.”
The event will be held on Aug. 21 at 10 a.m. to Aug. 22 at 3 p.m. There will be three separate scavenger hunts set up throughout Sun Peaks, two of which are done on bikes. Participants will have the option to choose which one they want to enter.
“If you choose either of the first two options, you will need to buy your own bike park pass for the day,” Burritt said. “There will be an entry fee to participate in the scavenger hunts which can be paid at the time of the event. All participants will get entered into a draw for prizes, which will be determined closer to the date.
"Please come and support the cause. You will get to meet our sweet Emma if you haven’t already.”
All proceeds from the fundraiser will go directly to Kif1a.org, a global community dedicated to improving the lives of those with the disorder, and finding a cure.
You can find more information about the Sun Peaks Scavenger Hunt: Emma’s Search for a Cure on Facebook here.
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