We are raising money for my grandson Reggi.

Just two days ago, our family’s world shifted when we learned that Reggi has a rare brain condition called hypomyelination. It affects the development of the brain’s white matter and can impact movement, development, and quality of life. Like many rare neurological conditions, it is complex, under-researched, and deeply uncertain.

Reggi is the much-loved son of Dan and Becky, and the adored little brother of Taylah and Rosie. He is surrounded by love — from his parents, his sisters, and a big family who would do anything to give him the best possible future.

At this stage, we don’t yet know which specific form of hypomyelination Reggi has. There are many different variants, and it will take another six months of testing before doctors can give us a clearer diagnosis. That waiting period is incredibly hard — living in limbo, not knowing what challenges lie ahead or what treatments may be possible.

What we do know is that research matters. For families like ours, research means answers. It means earlier diagnosis, better support, better treatments, and hope — not just for Reggi, but for other children and families facing the same rare and frightening diagnosis.

Our friends and family are coming together to support Reggi by organising fundraising events throughout this year and into the future. Every pound raised will go toward advancing research into hypomyelination and related conditions, so that one day families won’t have to wait so long for answers — or face so many unknowns.

Thank you for taking the time to read Reggi’s story, for supporting our family, and for helping us turn uncertainty into hope.