herald

Wednesday 13 December 2017

Family needs €45k to save Ellen from disease that killed her brother

AN Irish couple are hoping to save their 10-month-old daughter from an extremely rare condition which has seen her endure 100 seizures in the past week.

A decade ago, Tom and Lisa McGee were devastated when their 18-month-old son Christian died of Mitochondrial Disorder. Now the Portlaoise-based family is hoping to save their little girl Ellen from the same fate.

However, the McGees need to raise a massive €45,000 to avail of treatment in the US, as Irish doctors have said "nothing can be done" to save Ellen's life here.

"There is no cure for Ellen's condition and sufferers have a very short span of life.

"Last week she got progressively worse, one particular day she had 18 seizures and one of them lasted nine minutes, it was really scary," mum Lisa told the Herald.



STEM

"We've been talking to a specialist in California who can perform stem cell treatment on Ellen, he's done it before and it would mean she could have a life. If treated properly, her muscles could start working again and she could move herself. It won't solve the problem, but it would keep it at bay at least."

Ellen's parents are currently investigating what type of the condition their daughter has, something they never discovered with their son Christian, who passed away in February, 2002.

Children are either born with the condition or develop it by the age of ten. Some 4,000 children were born in the US with the condition last year, while another 1-in-4000 children will develop the condition by the time they turn 10.

When Christian McGee was born, treatment by stem cell surgery was virtually unheard of -- the situation is different for little Ellen.

"All Christian could do was cry, he couldn't do anything else -- it was tragic," said Ellen's uncle Paul.

"We've learnt that the mother is often the carrier, but as Christian's health became so bad, so quickly, we think Tom was a carrier too. We had no chance with him, but we're not giving up on Ellen," he added.

Doctors have suggested that Ellen's twin Grace, who does not suffer from Mitochondrial Disorder, may also be a carrier of this condition and could pass the genetic disease on to her own children in the future. Lisa and Tom are hoping to travel to the US in April to seek help for Ellen, who is now in Temple Street hospital in Dublin, where she is under constant observation.

Friends and family have set up the Ellen Barron McGee Fund to help Tom and Lisa raise the finances for Ellen's treatment. Donations can be made to the account at Bank of Ireland, Portlaoise; Acc number: 94295961; Sort code: 90-18-88.

labutler@herald.ie

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