Dear family and friends, we are reaching out to share about Elijah and a challenging journey we’re facing together. 

In December 2024, Elijah was diagnosed with a rare genetic condition called Allan Herndon Dudley Syndrome, or MCT8 deficiency. This condition affects his ability to move and communicate, and he relies on a feeding tube. Elijah also has Lennox-Gastaut Syndrome, a severe form of epilepsy, and dystonia, which causes him a lot of pain. He was accepted into an Early Access Program for a clinical medication trial to help with his condition. Unfortunately, the costs of the trial aren’t covered, and our insurance won’t cover the out-of-state care he needs. We have to pay for every appointment, test, and lab study out of our own pocket. Plus, we travel over 11 hours each way, pay for hotel stays, and cover all travel-related expenses. 

Elijah came to our family as a foster placement and he did not have any of the medical equipment that he needed to support his everyday needs. We were able to get in to a company that ordered a bunch of items under his insurance. However, pretty much every piece of equipment they ordered is not appropriate for him. We have been able to get insurance to approve replacing a few things but some things they wont budge and we have to wait 5 years to get something new. I am hoping to be able to purchase the appropriate things for him but do not have the means to do so. Just an appropriate bed is $10,000 on its own. He also needs a new stroller or wheelchair, activity chair, and gait trainer. 
 
Your assistance is incredibly needed and deeply appreciated. 

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