5 year old dies from Battens Disease

Stinicker · 18-01-2011 02:04PM #1

http://www.radiokerry.ie/news/

Saoirse Heffernan who suffered from battens disease died last night. RIP.

She and her family had appeared on the Late Late show in 2009 and "Bee for Battens - The Saoirse foundation" was launched raising money to support research and trials into the condition. Anyone living in the south west would surely have heard about it or encountered one of the many events that took place throughout last year raising money for the cause.

RIP little Saoirse, my thoughts are with your family

Sykk · 18-01-2011 02:06PM

RIP

Rubberlegs · 18-01-2011 02:07PM

Heard this on the radio this morning. My thoughts and prayers are with her family. Can't imagine what it must be like to lose a child. RIP little angel

biko · 18-01-2011 02:13PM

RIP

What is Batten disease?

Batten disease is a fatal, inherited disorder of the nervous
system that begins in childhood. Early symptoms of this
disorder usually appear between the ages of 5 and 10, when
parents or physicians may notice a previously normal child
has begun to develop vision problems or seizures. In some
cases the early signs are subtle, taking the form of
personality and behavior changes, slow learning, clumsiness,
or stumbling.

Over time, affected children suffer mental impairment,
worsening seizures, and progressive loss of sight and motor
skills. Eventually, children with Batten disease become
blind, bedridden, and demented. Batten disease is often
fatal by the late teens or twenties.

phasers · 18-01-2011 02:14PM

Oh God, her brother has the same thing. That poor family.

RIP

Kerrydude1981 · 18-01-2011 02:17PM

Just heard the news,RIP Saoirse

yermandan · 18-01-2011 02:17PM

RIP Saoirse. This has to be one of the worst possible diagnoses for parents with young children. Heart breaking stuff

Duggy747 · 18-01-2011 02:19PM

Always puts things into perspective when people (including myself) bemoan about trivial little things.

Always appreciate that I'm healthy.

RIP & my condolences to the family.

orourkeda · 18-01-2011 02:24PM

Isn't it a rare disease?

Screaminmidget · 18-01-2011 02:28PM

orourkeda wrote: »

Isn't it a rare disease?

Yes, very. as far as i am aware, they were the only 2 to have it in Ireland.
The newspapers down here were very helpful in highlighting the battle that the 2 children had, keepsing everyone up to date with news about the trials and things that they were trying. I think i read that Liam, saoirses brother had gotten into one of the final selections stages for trials in the US.

RIP saoirse, you battled hard.

5 year old dies from Battens Disease

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