Hello All,
Im a newbie and i hope you great guys and gals can help me help me.
My 16 month year old son has been diagonsed with an ultra rare illness for which he has been granted DLA at the higher rate as it will be life long.
He was diagnossed just after 12 months of age despite the medical problems starting when he was 5 months old.
Since birth he was under a consultant as he was not right then but at 5 months the real problems began with him not putting on any weight,contstant thirst and wetting through all the time,also not eating and also very dehydrated which resulted in numerous hospital visits and also the health visitor and also the GP.
He has been unwell since 5 months and had numerous tests to find the problem but the doctor could not find the problem despite numerous tests but even during this time his condition was getting worse and very demanding but the docs could not find the problem and could not treat him as they did not no the problem but that did not make it easier for us.
Eventually at just past 12 months our doctor did a simple urine sample which was not previously done and found he had a ultra rare disease and needed urgent treatment and he did not spot it as there was only 2000 people in the world with it.
My question is now:
We were awarded DLA from the date of diagnosis but we have medical proof he was BORN with this condition and symtoms are present from birth but obviously our doctor failed to spot this which of course is not our fault nor my sons.
Could we ask for DLA to be backdated further than the diagnosis date as he was born with this condition and symptons or will the DLA only pay from the date of diagnosis?
But surely his diagnosis states that affected suffrers have the problem from birth.