Halloween display raises awareness
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This article was published 22/10/2018 (1682 days ago), so information in it may no longer be current.
I’ve been admiring a yard in my neighbourhood that is all decked out for Halloween.
A witch must have been drinking her own brew and crashed into a tree. A giant spider has inhabited the front lawn and spun its webs all over. Pumpkin and skeleton people are watching for intruders.
“Willow’s Web” is written in large letters in the front window of the home at 1137 Devonshire Dr. W.
Anna Siedler wants to share awareness and raise research funds for her daughter Willow’s ultra-rare genetic disease, NGLY1 deficiency.
Anna decorated the yard to have some fun but, more importantly, to get people to read the information posted at the sidewalk, which features a barcode link to the Willows Web page, where donations can be made to the Grace Science Foundation.
When people inherit two defective NGLY1 genes, their bodies cannot separate and remove sugars from proteins. This deficiency results in significant health problems, including life-threatening liver issues, developmental delays, lack of tears when crying, seizures, and other serious symptoms. It has only been a mere five years or so since the discovery of this disease. There is currently no cure, hence the need for research. Less than 70 people have been diagnosed worldwide but there may be more, as some of the symptoms mimic those of other diseases.
Willow is only three years old and cannot walk or talk. Speech and occupational therapists come to the house to help her achieve whatever level she can.
“You celebrate things you never thought you would, like when she was able to hold her head up,” Anna says.
The Siedler family has hope that, with the research being done by the Grace Science Foundation, a cure will be found, or at least strides made in finding treatments.
The Siedlers chose this American-based research group, which was started by a parent of a child with the disease, for its dedication to researching NGLY1 Deficiency. Grace Science has gathered a team of experts from a variety of countries, hence the reference to the “web,” which collects all the findings from researchers and shares the information. So far, it has managed to publish multiple papers in the very short time it has existed. Anna likes that it is not a drug-targeted company.
If you are in the Kildonan Meadows area from now until Halloween, bring the kids to see the giant spider. Anna loves seeing them looking at the yard and enjoys making them happy.For a link to the donation page, visit https://gracescience.org/willows-web
All donations go toward research.
Suzanne Hunter is a community correspondent for Transcona.