Ethan’s a Golden Boy – His Juvenile Arthritis Mission

Juvenile Arthritis - Team Ethan

Ethan’s a Golden Boy – His Juvenile Arthritis Mission

At only 5 and a half years old, Ethan Golden is changing the way people view arthritis.  He was diagnosed with juvenile idiopathic arthritis one year ago and also suffers from epilepsy, asthma, and reflux.  However, none of his diseases are slowing him down.  He recently launched a Facebook campaign called “Team Ethan”, where he makes handmade necklaces to raise arthritis awareness.

Ethan’s journey to find the appropriate medication to help his arthritis was a bumpy one.  After first trying Naproxen, he was put on Methetrexate tablets, but suffered horrible side effects like hair loss, stomach pain, mouth blisters and painful headaches.  After a series of viruses, seemingly endless hospital stays, and frightening flare ups, he is now balancing twice weekly injections of Methetrexate, Indomethecin and Prednisone in decreasing doses.

Having juvenile arthritis greatly impacted Ethan’s life physically and mentally.  Before his diagnosis he was a rambunctious little boy, playing sports and being active, yet now his arthritis has rendered him wheelchair bound.  Having once been fearful of needles, he came to accept them as commonplace.  Hospital, doctor and therapy appointments became the norm instead of recess, soccer, and playtime.

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“The biggest challenge we face as a family is learning how to let our little boy still be a boy,” said Ethan’s mother, Helina.  “We have to learn to modify his activities so he can still participate.”

Participating is not something Ethan has been able to do recently since being on Methetrexate has resulted in extended hospital stays.  He missed most of the school year in order to receive more aggressive treatments and in result, has not had the opportunity to see his friends and other children his age.  His joint pain prevents him from going to school and living like a regular five year old boy.

But in spite of it all, Ethan has chosen to fight and give back.  When a routine tonsillectomy caused him to fall into respiratory distress back in January, Ethan was once again hospital bound.  However, being a frequent visitor, he formed a special bond with the nurses and healthcare providers, all of them rooting for him to not only recover from his tonsillectomy, but also his juvenile arthritis.  As a way of thanking them for their support, Helina suggested her son make them necklaces, that way he could show his appreciation whilst incorporating a way to get his hands moving again.

The necklaces became a huge success and became jewelry that people sought him out for.  Originally, people would pay Ethan with popsicles, but now that he has launched his own Facebook page that has over 400 fans, he has raised his price to a respectable $5 donation.  The necklaces represent juvenile arthritis and Ethan hopes that by people wearing them, awareness of JIA will spread even further.

working on necklaces

On average, he sells twenty necklaces per week, with more being ordered every day.  The demand is great, but the project keeps him focused and channels his energy toward a respectable cause.  Ethan also is hosting a Blue Shirt Day at his school to help raise funds for JIA and he will be collecting dimes, of which he hopes to raise 1 million.

“We have a lot of people telling us to change Ethan’s goal to something more doable,” noted Helina.  “Our son wants to be an Olympic swimmer and doctor and JIA isn’t going to stop him from doing that, so why should we limit his goals when it comes to raising awareness?”

Ethan wants to change the world’s view of silent illnesses.  He is learning to accept his JIA and be okay with it, while still trying to lead as much of a “normal life” as possible.

But normal might not be something in the cards for this extraordinary boy.  He recently embarked on a mini-local media tour, being interviewed on television and by local publications in his hometown of Ontario, Canada.

“We teach Ethan that you can do whatever you put your heart into.  Just because you have arthritis doesn’t mean you can’t reach your goals,” Helina concluded.  “Some goals might need to be adjusted, but you can still reach for the stars.  Ethan has JIA, but JIA doesn’t have him.”

ANRF
Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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