Support Eli's EDS Rehabilitation

Elijah Hughes was diagnosed with Ehlers Danlos Syndrome (EDS) in August of last year after suffering from multiple joint injuries. Since his diagnosis, the symptoms that marry this disorder have only worsened and become harder to anticipate and control. 


Eli is a 12 year old boy. He has always been quick to kindness and lending a helping hand to anyone in need. Before the symptoms of EDS became so debilitating he often fished with his Dad, spent his pastime swimming and target shooting with his Grandfather. He recently found passion in baking and cooking, however, his symptoms have hindered his ability to participate in these activities, let alone enjoy them.


EDS is a genetic disorder that affects the connective tissue and multiple systems of the body, including the musculoskeletal system, autonomic nervous system, gastrointestinal system, immune system, and peripheral nervous system. EDS is a rare disorder that is difficult to manage and predict how it will attack the body next. 


Over the last couple of years, Eli has met with specialists such as Neurologists, Physical Therapists, Gastrointestinal Doctors for complaints such as migraines, dizziness, nausea, stomach pains, and the struggle to regulate his own body temperature. Despite the medications, endless appointments, diets, therapy, hospitalizations due to extreme dehydration Elijah has not found relief but has instead become even more ill. 


On May 5, 2021, Elijah was admitted to Golisano Children’s Hospital for 6 days with Interstitial Nephritis (kidney inflammation and swelling.) While the Doctors have been able to stabilize and treat Eli’s kidneys, for now, they are unsure what could be causing this kidney dysfunction.


Having exhausted all nearby resources Eli’s mom reached out to Cleveland Clinic Children’s Rehabilitation Hospital in Ohio. After an in-person interview with the Functional Medicine Rehabilitation Specialists on May 18th, they expressed concern that Elijah is also suffering from Amplified Musculoskeletal Pain Syndrome and accepted him into a three-week multidisciplinary therapeutic program June 28th-July 16th. There he will participate in physical therapy, occupational therapy, desensitization, reconditioning and so much more. 

This non-pharmaceutical inpatient program aims to provide Eli with the skills to cope with his chronic pain illnesses and the tools necessary to live a healthy, happy, and full life every child deserves the chance to have.

Here we are raising funds to cover travel expenses for Eli and his parents, hospital bills, and the remaining costs of this rehabilitation program.
 
Visit our Facebook page: https://www.facebook.com/FundforEli 

Thank you so much, every bit of support helps!
-Elijah’s family


The Zebra is the unofficial mascot of the Ehlers-Danlos community...
In medicine, the term “zebra” is used to describe a rare or exotic medical diagnosis and the majority of the types that make up the Ehlers-Danlos syndromes are rare #Elizebrastong #zebrawarrior #ehlersdanlossyndrome



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