An advocate is someone who is always willing to help or provide answers to hard-to-solve problems.
7-year old, John has an undiagnosed disorder that his family has been trying to find answers to since he was born, with no luck.
Johns’s parents have run the gamut of testing and are also part of the Undiagnosed Disease Network which has formed a team of Doctors from Harvard, Stanford, Baylor, Duke, and the U of U all hoping to connect people with similar symptoms to find solutions.
John’s webpage officially went live on their site and they are sharing it with their many connections in hopes that perhaps just maybe a friend of a friend of a friend might also have something similar and that connection might finally lead to some answers. John suffers from global developmental delay, muscle weakness, hand tremor, increased tone in lower limbs (hypertonia), and facial differences.
John has global developmental delays, meaning he’s behind the curve in almost all developmental milestones. He is non-verbal, although is starting to use some words and signs to communicate and didn’t start walking until he was almost 4. That all said, he’s probably one of the happiest kids around, gives the warmest hugs, and has a certain effect on everyone who meets him. He’s loved and adored by all, but especially by his older 4 siblings, who truly are his best friends and protectors.
The Undiagnosed Disease Networks‘ purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.
If you want to help out, spread the message, or get involved follow John by going to the @_thejohneffect on Instagram. Share, share, share! A diagnosis would mean the world to John and his family.
Do you know a person who has helped someone in need?
If you have, please fill out the form to nominate a good Samaritan you know. The most generous nominee will be selected and announced on Good Things Utah weekly. Each month, a new winner will be featured on Good Things Utah as recognition for their service. They will also receive a gift certificate for dinner and a movie.
Visit The Advocates to find out more.
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