Orange Occys

Sharon, Emma, Letty and myself are riding this October in memory of my son Elijah to fund critical therapy, vital equipment, connection and moments of joy for over 1,600 Brainwave children living with brain disorders.

Elijah was diagnosed with Leigh Syndrome, a severe neurological metabolic disorder. Leigh syndrome is characterized by the development of symmetrical, necrotic lesions in the brain, particularly in the basal ganglia, brainstem and cerebellum.

The brain injury caused by Leighs syndrome manifests in various neurological symptoms, including. 

Developmental delays or regression, Motor problems dystonia, Seizures, Respiratory problems due to brainstem involvement leading to respiratory failure, Ophthalmological abnormalities and Muscle weakness hypotonia  

Our beautiful Eijah's 5 year journey required hourly routines, Equipment to support him in sitting, standing, Bathing, feeding (Peg Feed), medications. Modifications were needed around the house for access of his orange wheelchair.

Elijah would attend weekly therapy sessions and medical appointments with his Occy (Toy octopus) by his side. Even though Elijah was non verbal he would fill the hearts of those who surrounded him with unconditional love, joy and happiness. While continuing to fight this degenerative illness.  

Our beautiful Elijah entered God's kingdom on the 10th of July 2025, we will forever love and miss our beautiful son Elijah for he is in the arms of Jesus now. 

We will be riding to raise money to support children who are diagnosed with brain illness or injury – life-changing conditions like epilepsy, stroke, cerebral palsy, brain injuries and rare neurological disorders. That’s more than 3,000 families every year, suddenly facing fear, uncertainty, and overwhelming challenges. 

Your donation is more than a number – it provides tangible support for families navigating a child’s brain disorder. It helps fund therapy, essential equipment, and access to programs that bring hope and connection when it’s needed most. Support our team and help us ride for brighter futures. Together, we ride. 

I can do all things through Christ who strengthens me (Philippians 4:13)