PLEASE HELP OUR LITTLE KATIE
A MAGHERAFELT couple are trying to raise thousands of pounds to give their chronically ill baby daughter "a fighting chance of life."
Gary McCann and Mekila Maguire, of Sandy Braes, are appealing to MAIL readers and the general public to help them in their agonizing plight.
Their daughter, Katie, who will be nine-months-old on Sunday, suffers from intractable epilepsy or, as they say, "the worst kind of epilepsy."
So acute is the condition, which racks little Katie's fragile body with frequent and uncontrollable fits, that each and every day is a fight for survival. Both parents have given up their jobs to look after her.
They have also set up an audited fundraising campaign, www.keepbabykatieawake.com, with the view to raising enough money to take Katie to America to consult with a team specialising in the field of epilepsy.
The distraught parents highlight why they have been compelled to set the campaign in motion, why it is growing in urgency with each passing moment and why they believe that it is "Katie's greatest and only hope."
"The seizure activity is hindering Katie's development and causing her brain to deteriorate. She has the mental age of a new-born," said Mekila. "We are in a race against time to try and save our daughter."
She points out that the month of January marked a frightening turning point in her daughter's health and development - prior to this, Katie had experienced seizure activity, but not on such an unmerciless scale. In the first few weeks of life, Katie had been responsive, had bottle-fed and had displayed a gritty character. No one could have predicted what was about to happen.
Today, Katie's almost unrecognizable from the fighter she was. Her mum says that the fits are growing in intensity and frequency at an alarming rate. She adds that Katie's medication appears to be 'knocking her out,' of having a sedative-type effect which is masking the problem, rather than getting to the root of it.
The couple believe that due to the illness, Katie cannot see, eat or swallow, and that it is restricting her mobility.
"We've been told that Katie has perfect eyes, but she cannot see because of the fits - so much electricity surges through her brain when she has a seizure, that it confuses the signals which should be transmitted to her eyes," says Gary.
"Katie cannot swallow either; there's a very real danger that she could choke on her own salvia."
Katie is fed through a through a Nasal Gastric tube (a small pipe which is inserted into the nose and which leads to the stomach). The tube is a constant, attached to Katie 24-hours a day. Feeding can take up to two hours at a time, after some crucial health checks have been carried out. Contamination of the tube poses another danger, that of transmitting an infection, which could be fatal.
"Katie can't roll over, or reach out to grasp anything," says her mum. "The only activity is seizure activity. The fits are horrifying. They're becoming more frequent and more violent. We can't bear to watch Katie suffering. Her medication isn't helping her."
Katie needs round-the-clock care. Her heart and lungs are monitored daily. Her bed is a specially constructed cot, designed to impede her movement and so protect her, in the event of a seizure.
Gary and Mekila say that Northern Ireland's top medical professionals do not believe that they will be able to get Katie's illness under control.
"They don't hold out much hope for Katie. No one has been able to tell us exactly what is wrong."
However, the couple are optimistic that a diagnosis can be made which will help to alleviate Katie's condition – and that the answer lies in America.
"We want to take Katie to Chicago, to the Memorial Children's Hospital," they say. They explain that the MD of the hospital is the world's leading specialist in epilepsy, the renowned Epiloptologist, Douglas R Nordi Junior.
Another motivating factor is that highly sophisticated scanning equipment is available at the hospital, equipment which is not available here.
The neuro-imaging equipment helped medical experts in Chicago to assess the condition of another Northern Ireland patient, who has intractable epilepsy - young Billy Caldwell of Omagh. The case was well documented in the press and broadcast media.
The 'breakthrough' has led to a dramatic improvment in Billy's health. He had been given six months to live.
Billy's mum Charlotte has been offering advice and encouragement to the Magherafelt couple. And, it is she who urged them to kick-start the 'keep baby katie awake' campaign.
Of the sophisticated equipment and medical expertise in America, Charlotte said: "This MRI unit and medical resources with 15 paediatric epiloptologists at their disposal, means that Chicago Memorial Children's Hospital is the foremost epilepsy neuro-imaging and treatment centre in the world."
The powerful scanner, she says, enables physicians to conduct 'brain-mapping' and so to anylse every last fibre of the brain. "It is one of the best diagnostic tools to assess a child," Charlotte said.
Gary tells the MAIL that his and Mekila's lives are unrecognizable since Katie's arrival. The couple have other children, but family-time is centred on little Katie.
"Katie gives us the strength to keep going," he says. "Every day that Katie's still with us is a very precious day indeed."
If you would like to support the couple's campaign, you can make a donation at any Bank of Ireland branch.
Alternatively, you can also visit www.keepbabykatieawake.com.
Mekila and Gary thank Charlotte Caldwell for her support and encouragement. Thanks are also extended to their parents, John and Angela Maguire of Harmony Hill, Broagh, Castledawson, and Jackie and Bernadette McCann of Hunter's Crescent, Omagh.
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Saturday 04 February 2012
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