the people of Portlaoise are being urged to unite behind a couple to make sure that a special little girl get the life-saving treatment she needs in America.
Lisa McGee, who is originally from Dundalk, and Tom Barron from Dublin have made their home in Esker Hills, Portlaoise. They are hoping to save their 10 month old daughter, Ellen from an extremely rare condition which also took the life of her brother 10 years ago.
At just 10 months old, Ellen was diagnosed with mitochondrial disorder, which is worsening by the day. Her twin Grace, fortunately does not have the same condition.
“The twins were a suprise, we hadn’t planned on having anymore children. But when we found out Lisa was pregnant we just hoped and prayed that they would be fit and healthy,” Ellen’s dad Tom explains.
Ellen and Grace were born on April 14, last year, but Lisa and Tom soon suspected that something was wrong with Ellen.
“When Ellen was around three or four months old we thought she was not developing like her twin sister, Grace. We took her to the doctors, but they said we were just comparing her too much to Grace.”
Last October, Tom and Lisa received the devastating news that Ellen had to same disability which took her brother’s life when he was just 18 months old.
The family have been in contact with a specialist in California who can perform stem cell treatment on Ellen. Although it is not a cure for the disorder, it would stop the progression and give her a chance of survival. However, this treatment will cost €50,000 and the family need to raise this money in just one month for Ellen to avail of the treatment in America in April.
“The hospitals and doctors here are amazing, they are trying everything they know but they know very little about mitochondrial disorder.”
Tom explained what mitochondrial disorder is.
“The mitochondrial produces energy for the cell, however with mitochondrial disorder, its not functioning 100% and it not producing enough power for the cell to function properly,” he said.
Sadly, in the last couple of weeks Ellen got progressively worse taking up to 20 seizures in one day and almost 100 in a week.
“A couple of weeks ago Ellen started seizing at 4am one night. We were in Portlaoise Hospital, who were in contact with Temple Street Children’s Hospital, where Ellen is a patient, trying to get them under control. But by the end of the week she had 20 seizures in one day. Slowly but surely her condition is deteriorating,” he said.
Events have been organised so far in Dundalk, Dublin, Wicklow and Carlow, but Portlaoise are rowing in with support also.
“We can’t thank people enough, it’s a massive amount of money. Most people will never see that sort of money,” said Ellen’s father.
Tom hopes to organise a gig in Portlaoise soon and is looking for spot prizes or bands who would be interested in playing on the night.
Friends and family have also set up the Ellen Barron McGee Fundraiser Account to help Tom and Lisa raise the finance for Ellen’s treatment. The details for anyone wishing to make a donation are: Bank of Ireland, Portlaoise, sort code: 90-18-88; account number: 94295961; Account name: Tom and Lisa Barron ref: Ellen. Alternatively donations may be left into the Parish Centre. Details of other fundraising events can be found on The Ellen Barron McGee Fund Facebook Page.
Mothercare Portlaoise are also organising a cupcake and coffee day for Ellen this Saturday (March 10) from 10am to closing. The staff will be making cupcakes and goodies and Phil Duggan from the Square Meal has very generously donated all the equipment needed to run the event. On the day there will also be raffle tickets on sale for spot prizes.