HI, MY NAME IS JUSTINE. BOTH OF MY CHILDREN AGED 12 YEARS AND 6 YEARS HAVE LONG QT SYNDROME. THE OLDEST ONE I HAVE HAD DISABILITY FOR, FOR THREE YEARS AND HAVE JUST HAD TO REAPPLY AND HAVE BEEN GIVEN IT FOR ANOTHER TWO YEARS WHEN NO DOUBT I WIL HAVE TO REAPPLY. IT WAS HASSLE GETTING IT AND I DID HAVE TO GO TO TRIBUNAL WHERE THEY EVENTUALY JUDGED I MY FAVOUR! THE YOUNGEST CHILD WAS NOT ENTITLED TO DISABILITY AT THE TIME WHEN I APPLIED AND I ASO WENT TO TRIBUNALWITH HER CASE BUT THEY SAID THEY COULDN'T DISTINGUISH THAT HER NEEDS WERE ANY DIFFERENT TOTHAT OF A NORMAL CHILD WITHOUT LONG Q T SYNDROME SHE WAS JUST FIVE AT THE TIME. I AM NOW IN THE PROCESS OF REAPPLYING AND AM AWAITING THEIR ANSWER TO SEE IF THEY DECIDE SHE IS ENTITED TO IT THIS TIME, IF NOT NO DOUBT IT IS OFF FOR ANOTHER TRIP TO THE TRIBUNAL. I DID GET HELP OF WELFARE RIGHTS TO FILL IN THE FORM THIS TIME AROUND AS THEY ARE WELL VERSED IN FILLING THEM IN. HOPE THIS HELPS

Hi there we have 2   girls both with LQT aged 6 and 3and we had our appeal tribunal yeterday.  Unfortunatley for us its been rejected  as I guess they couldnt agree with our argument that our kids needed more supervision than a normal child of the same age, but we have leave to appeal again.  Its interesting to note that some other parents have been successful as then its shows the system is not working correctly and that will be our main argument.

I would be grateful if you could pass over any details of the welfare rights people that assisted you and if you were represented at the tribunal.  our email is griff835@yahoo.co.uk - We don't want to give up and this might be the key to tipping the balance Thanks Rob & Jan