Hi, my name is Andrea. My granddaughter Eva has a rare genetic disease so my partner Richard, Eva's Grandpa is taking on his biggest challenge to date, he will be hiking the Welsh 3000s, to summit 15 peaks over 3000 ft in 24 hrs on 21 June 2025.

Eva's Story

Eva was born on 3d May 2021, a happy and healthy baby who was hitting all her milestones. At approx 20 months Eva started having trouble with her balance and upper posture, the heath visitor referred her for physiotherapy and from there referral to neurology where they suspected a serious neurological condition. Eva had to undergo a lumber puncture and MRI. On 6th June 2023 she was diagnosed with late infantile metachromatic leukodystrophy, (mld), a rare inherited disorder affecting mainly the 'white matter' of the brain, causing a progressive loss of physical and, later, mental skills. Eventually the combination of the diseased brain and physical weakness become too great to sustain life, and death usually occurs between the ages of five and eight.

We thank you for taking the time to read Eva's story and appreciate all the donations towards the fundraiser. This will enable her family to make precious memories and for equipment that is forever changing as Eva's illness changes.