Eventually Saoirse was diagnosed with Batten's Disease
- a moment the Heffernans will never forget.
People with Batten's Disease
are affected in different ways but common symptoms t include visual impairment resulting in blindness, epilepsy, muscle spasms, decline of speech, language and swallowing skills and the loss of mobility.
There is no cure yet for Batten's disease
which affects movement.
Variant Batten's disease
is a progressive condition which robs children of their speech, eyesight and ability to walk and can lead to death.
At the time, doctors in Yorkhill had only seen one other case of infantile Batten's disease
Robbie had tests for another two years before experts diagnosed infantile Batten's disease
, a rare disorder that attacks the nervous system, leaving kids blind, bedridden and mentally impaired.
Llinos had been misdiagnosed - she didn't have Batten's disease
Llinos Owen was told by doctors at Alder Hey children's hospital in Liverpool that she had Batten's disease
, a degenerative brain disease for which there is no cure.
The trust is a children's charity set up after the death last Christmas from Batten's Disease
of Rhys Daniels, whose parents I know," he said.
Lovejoy star Ian McShane, left, was among the mourners comforting the father of brave little Charly Daniels, the ten-year-old Batten's disease
victim who was buried yesterday after losing her battle against the same crippling brain condition that claimed her brother.
They are determined to celebrate the life of 10-year-old Charly, who died earlier this week of Batten's disease
, a rare genetic disorder which can cause blindness, dementia and severe lack of co-ordination.
Host Grainne Seoige saw Mary and Tony Heffernan land the top accolade for their selflessness after losing their children Saoirse and Liam to Batten's Disease