Baby battles disease that killed brother
Dublin People 09 Mar 2012
THE family whose baby is suffering from the same
disease that killed her older brother has made an emotional appeal for
Southsiders to help send her to the United States for treatment.
Tom Barron (33), is the father of 10-month-old Ellen
Barron McGee, who has inherited the life threatening condition and needs stem
cell treatment in the US to improve her chances of survival.
The highly debilitating and fatal disease known as
Mitochondrial disorder caused the death of Ellen’s older brother, Christian, 10
years ago when he was only 18-months-old.
Tom, who is originally from the Ballyboden area, moved
with his partner Lisa to Portlaoise six years ago where the family now lives.
Tom and Lisa believe their little daughter could have
a far greater chance of survival if she receives stem cell surgery in the US.
Tom explained how the disease has significantly
limited his little daughter’s quality of life.
“She is a beautiful child,
? he said.
“She laughed up
until about a month ago until she started to get seizures. She went through a
lot of seizures over a period of a week and unfortunately we haven’t heard her
laughing since.
“She has moderate brain damage from the mitochondrial
depletion in the brain. She is lethargic and has very limited movement in
general. It is a degenerative disorder, so over time more damage occurs from
cells dying off because they are not producing the energy needed for her to survive.
“Eventually then everything begins to break down and
the vital organs shut down. In 2002 we also lost our son to the disorder. He
lived for 18 months and most kids with mitochondrial disorder will not see
three or four years.
?
Tom explained how he and his wife have been told that
the stem cell treatment could give Ellen a brighter future and a decent quality
of life.
“We haven’t got a prognosis for Ellen yet,
? he added.
“From people we have been talking to in the US and other areas around the world
the treatment promises to stem the damage being done from the disorder.
Basically the stem cells replace and repair the damaged cells.
“They promise a huge improvement in Ellen’s capability
to look after herself and move forward and have a life rather than her going
downhill and the disorder ending her life.
?
Tom and Lisa are trying to raise the
?¬60,000 they need
to send Ellen to a stem cell specialist in California.
“We had an anonymous donation in Dundalk and a guy
walked in and gave us
?¬5,000,
? he revealed.
“We have raised
?¬8,000 since
February 24. We need
?¬45,000 for the first treatment. They tell us that if that
goes well we will need to go back four or five times after that.
?
A fundraising night for Ellen will take place in the
XS Night Club, Rathfarnham on Friday, April 20 at 9.30pm. Doors open at 8.30pm
and entertainment on the night includes a version of the Take Me Out Game show,
which will involve contestants from TV3 taking part.
The night will also include a
‘Vegas Legends Tribute
Show’ with support from local Ballyboden band
‘Lady and the Tramps’. This will
be followed by the
‘Hell Fire Club Old Skool Club Night’. There will also be a
raffle.
Tickets for this event are e15 and anyone who wants to
purchase some for the fundraiser or a raffle ticket can tel Darren on
087-6647205 or Natalie on 086-1548168.
Donations to the Ellen Barron McGee Fund can also be
made to Bank of Ireland, Portlaoise branch, Account Number 94295961, Sort Code
90 18 88.
All details can be found on the main Facebook page for
Ellen http://www.facebook.com/ellenbarronmcgee
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