Preston was 18 months when we found out something wasn't quite right as he still wasn't walking. We got a diagnosis of leukodystrophy in 2009. He went downhill from there to nil by mouth so is peg fed. He's gone through a lot in his 15 years with 2 respiratory arrests, a cardiac arrest and now he's on full 24 hours bipap. He's mostly bed bound now and doesn't go to school after his cardiac arrest which he had at school.
We found out after his arrest, after having another scan that he has RTD. We are still today having lots of issues, mostly his gut problems, but he's still fighting on and still my happy handsome lad.