Kynan was diagnosed with adrenaloukodystrophy in June 2022 he was given 2 years to live we have changed his diet gluten free sugar free organic to give our boy the best chance possible we moved back home to give Kynan a happier life around familiar family and friends but we don’t have a pool now and he needs one to keep him moving his ankles are tight we need him not to stiffen up and keep walking

as his mum carrying the genetic disease I’ve had to give up work as my legs are affected so borrowing money for a pool is not a option re finance is impossible

Kynan wish is a pool for his mobility

please help keep our boy moving and pray for a cure Kynan is so strong and such a fighter

Adrenoleukodystrophy (ALD) is a genetic disease that has been haunting many families, silently. This severe disorder affects 1 in 18,000 people globally, particularly young boys, often resulting in critical neurological deterioration and in many cases, premature death. Our son, Kynan, was diagnosed on June 29th, 2022. Doctors have, heartbreakingly, given him only two years to live. This could have been prevented with just a simple test at birth. ALD leads to an array of numerous debilitating conditions such as loss of mobility, impaired speech, loss of eyesight, and, in many cases, leaves its victims in a vegetative state. Early diagnosis could pave the way for interventions that can drastically alter the course of the disease, including dietary treatments and bone marrow transplantation. By implementing mandatory ALD screening in newborns, we can save many lives and protect countless families from experiencing the devastating effects of this genetic monster disease. Sign this petition to call on health authorities to make ALD screening a mandatory part of newborn screening programs.

On Saturday 24th may 2025 Kynan had a terrible turn and still in ICU he had seizures they couldn’t control he is still under sedation please pray for our boy