LIZ BECOMES PATRON OF BEE FOR BATTENS
Liz has just been confirmed as a Patron of BEE FOR BATTENS, The Saoirse Foundation. Liz’s brother,
William Madden, was one of the first children in Ireland to be diagnosed
with the fatal Battens Disease. Speaking about her acceptance of this
role at the weekend, Liz said “I am delighted to be part of such a
wonderful charity. When my brother was diagnosed many years
ago, very little was known about this disease and there was no public
awareness whatsoever. It’s so wonderful to see such fantastic work
being done now to educate people about Battens Disease and its long term
effects not only on patients but also on their families and friends. I
am honoured to be part of this wonderful charity.”
Bee For Battens is an Irish based national charity to raise awareness of Battens Disease and
to support research and participation in Medical Trials. Promoting
support to all those affected on this Island of ours and beyond.
By raising awareness & working together we can all
do our
bit to help those affected by this rare neuro-degenerative &
always fatal condition, which affect babies, young children
& juveniles in
Ireland and across the
globe!
We want to change that, and we need
your help. Wherever you are or what ever you do, you
can help us to create a
BUZZ about Battens.
Visit our
How
You Can Help page, where there are lots
of
ideas and
ways where you can BEE the difference in helping raise funds
to further our goals!
Presently our top
priority is to fund some of our affected kids on medical
trials in the near future & to give hope those affected
families.
You can also
Join Us in
achieving our goals, become a Supporter
or if Battens Disease affects you or your family
please contact us, where you will find out that you not
alone in fighting this devastating disease.
Battens
Without Borders!
Registered In Ireland CHY 19226
WHAT IS BATTENS DISEASE?
Batten
disease is an inherited disorder of the nervous system that usually
manifests itself in childhood. Batten disease is named after the
British paediatrician who first described it in 1903. It is one of a
group of disorders called neuronal ceroid lipofuscinoses (or NCLs).
Although Batten disease is the juvenile form of NCL, most doctors use
the same term to describe all forms of NCL.
Early symptoms of Batten
disease (or NCL) usually appear in childhood when parents or doctors may
notice a child begin to develop vision problems or seizures. In some
cases the early signs are subtle, taking the form of personality and
behaviour changes, delayed speech, slow learning, clumsiness or
stumbling.
Over time, affected children suffer mental impairment,
worsening seizures, and progressive loss of sight and motor skills.
Children become totally disabled and eventually die. Batten disease is
not contagious nor, at this time, preventable. To date it has always
been fatal.
There are four main types of NCL; Infantile, Late
infantile, Juvenile and a very rare form, Adult NCL. Symptoms vary with
each child. In some, the disease progresses more quickly and in some
slower. Early symptoms of Batten disease are confusing and not easily
recognised even by medical personnel. Batten disease is rarely
diagnosed immediately because of the variability in symptoms and age of
onset. Children are often mistakenly thought to have epilepsy or a form
of mental retardation. Adults are sometimes labelled schizophrenics.
This can be a difficult and frustrating time for all concerned.
As
yet, no specific treatment is known that can halt or reverse the
symptoms of Batten disease. There are some medical trials & studies
being carried out in the USA, UK, Australia, Germany & the
Netherlands that can address/control some of the symptoms but so far
these treatments have not prevented the final outcome of the disease.
Meanwhile, scientists pursue medical research that could someday
(hopefully in the near future), yield an effective treatment. More
government and public support are needed to provide the resources to
help them.
