and the support of The Saoirse Foundation, Taylor's Tale, Garrett the Grand Batten Fighter, Hayden's Batten Disease
Foundation, and the Batten Disease
Support and Research Association, is anticipated to enter clinical trials in 2018.
Kate Toohey with her son James who suffers from Batten disease
The charity Batten Disease
Family Association has launched a petition to have the decision reversed.
Nicole and Jessica Rich, pictured with mum Gail, dad Matthew and brother Louis, have both been diagnosed with Batten disease
but a government body has decided the NHS will not fund a potentially ground-breaking treatment
is commonly used to make reference to all forms of Neuronal Ceroid Lipofuscinoses (NCL).
The family was referred to Great Ormond Street Hospital for a second opinion, and that's where Matthew finally got his diagnosis of Batten disease
is a fatal, inherited disorder of the nervous system that typically begins in childhood.
It got worse and after 18 months the doctor came back to us saying she had Batten disease
Carly, 34, and Paul, 38, were devastated when neurologists diagnosed the youngster with rare Batten disease
, which experts say "breaks down the brain, cell by cell".
Two years later, he faced another challenge alone to run coast to coast for Batten Disease
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is named after the British paediatrician Frederick Batten, who first described it in 19 0 3 .