Edition 19/2020
November 12, 2020
NorthernRiversTimes
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HIGH HOPES FOR ELORA by Halden Boyd
ELORA Treen is a happy little two-year-old girl with a huge and bouncy smile, but she faces a challenging life ahead, with physical and emotional milestones everyone who loves her are planning to see met. And these are the goals she and her family are dealing with as the community rallies to Elora’s quest to just be normal and to be happy. Elora has a medical condition called NGLY1, which is an extremely rare degenerative disease which has just been discovered, as experts worldwide collaborate to find an answer and cures. NGLY1, which is pronounced EN-GLY-ONE, is only shared by one other Australian child and affecting only 70 people throughout the world. Her quality of life will be impacted greatly and getting her the help she needs will be challenging for her parents. As Elora played, as a typical cute kid does, and the ABC TV Kids show was keeping her alert, she played with bright toys and smart books. Her mum Jessica was teary eyed with her partner Adrian as they came to terms with the future, which is now looking much brighter. As it happens, the Grace Science Foundation in the USA which researches rare diseases took on the challenge in efforts to find a cure. “NGLY1 is a genetic disorder where the sufferer is deficient in an enzyme that breaks down protein and affects the nervous
system,” Elora’s mum, Jessica Treen, said. “The disorder leads to physical development being held back in children big time... some children can walk, and others like Elora can’t, most kids are non-verbal or just speak one or two words.” “Basically because the enzyme doesn’t break down
Jessica and Adrian Treen with their daughter, Elora, who is facing a challenging medical condition
the protein in the nervous system it accumulated so there is degeneration of the nervous system, and kids get to a point where they progress and then they tend to go the other way.” “In saying that, there are 50 different mutations of it, including things like blindness.” However, there is hope because the Grace Science Foundation is trialling an enzyme replacement drug which will help stop degeneration in its tracks until a cure can be found. In the meantime, Jessica and Adrian’s family have set up a GoFundMe campaign called ‘Hope For Elora’. “Eventually we will have to take Elora to the USA for treatment and we were just dumbfounded that the family set it up without us knowing, and we are so humbled by the support we have received from everyone,” Jessica said. However it’s not the money when everything is boiled down, and Jessica has started an Instagram page to get word out to the community about the rare disease. “It is called ‘Living Loudly NGLY1’ and it aims to educate everyone about the disorder.” “While it is not looking overly promising for Elora we do have hope, as we just want to say thanks to everyone for their kindness and support.” The GoFundMe ‘Hope For Elora’ page can be accessed on the Internet at https:// au.gofundme.com/f/hope-forelora