D.L.A --Transition from child to adult

Iam a single parent with a child who has Cystic Fibrosis.He was awarded DLA--- CARE COMPONENT-- HIGHER RATE at 3 months old.
He is 16yrs old on 13 Oct 2011.According to the Dept.of Works and Pensions he then becomes an adult and as such must reapply for DLA.This he is supposed to do himself.I did it for him,found it most difficult,but tried to be as truthful and accurate as possible. D.L.A. HAS BEEN DECLINED.So having been classed as having a serious life threating condition with a limited life expectancy, overnight he is no longer disabled.The critia for form filling when describing yourself as disabled is that you must be in receipt of DLA. e.g for tax credit purposes you must be getting DLA.Anyone had any experience of this?Any advice would be appreciated.

This is pretty shocking for you. I think that the charities linked to the condition may be of help when you appeal and appeal you must. The Cystic Fibrosos Socoety may help but SCOPE whuch deals with children and people with cerebral palsy may have guidelines that help. Good luck.