Meet Eli. This little angel is nine years old and brings joy and hope to all who know him. Eli was born following normal pregnancy with no complications. He was a healthy, perfect baby boy and developed normally. He hit all his milestones quickly and thrived. The tiny bundle of joy grew into a teetering active toddler.
Surprisingly, at 18 months old he had a seizure while sitting on their bed. The doctors brushed it off, stating that many children will have at least one seizure as they develop. Unfortunately, the next seizure occurred the very next month and they persisted daily. Doctors tried medication after medication, and even a surgery, but to no avail. They gave Eli a diagnosis of Epilepsy, but it did not seem to adequately explain why he also experienced significant regression in his developmental skills.
After a battery of multiple assessments, the heartbreaking realization that something more serious was going on. Eli has a rare genetic disease called Tay-Sachs.
Tay-Sachs is a hereditary neuro-degenerative disease. It is a build-up of fatty acid on the brain which causes sections of the brain to become deprived of all functions. A person with Tay-Sachs slowly loses functional abilities including walking, eating, hearing and vision.
His family is cherishing every single moment they get to spend with him. Eli just celebrated his 9th birthday. Sunshine on Ranney Day aims to help make Eli’s days a little brighter by giving a concrete carport area for their van to park to help the family get him in and out of his home easily.