Reeva's Journey
Organised by Just4ChildrenJust4children are raising money for Reeva's ongoing therapy and specialist equipment to ensure that she reaches her full potential and becomes as independent as possible.
Story
Reeva is aged 2 and half from Caerphilly. She was born on 25th October 2021 at 41 weeks with no complications. From 6 weeks old Reeva struggled with feeding and had severe silent reflux which caused her a lot of pain. This resulted in several hospital admissions. At 6 months old we noticed Reeva making abnormal eye movements. As a result of an MRI scan, Reeva was diagnosed with hypomyelination of the brain.
At 18 months old Reeva was devastatingly diagnosed with a rare genetic, life limiting, condition called Aicardi-Goutieres Syndrome (AGS). AGS is a leukodystrophy, a group of disorders that affect the white matter of the brain. In AGS, the body's immune system turns on itself in a destructive way causing damage to the brain. For Reeva, this means that she is severely physically disabled and visually impaired.
In spite of this, Reeva is the most determined little girl, with the most infectious smile. She is defying the odds by making slow but steady progress. As her family, we are fundraising to give Reeva the best life possible. Private therapies and specialist equipment come at great cost but are vital to give Reeva the best chances at living the most fulfilling life possible.