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Sick child's progress 'set back by months'

Katie Maguire

Published Date: 05 November 2009

THE progress of an Ulster toddler suffering from a rare form of epilepsy has been set back by at least four or five months after she was struck down by pneumonia.

Katie Maguire, from Magherafelt, was rushed to an intensive care unit in the US last week after one of her lungs collapsed.

The two-year-old lives with a form of epilepsy that causes her to have daily seizures.

Her parents, Gary McCann and Mekila Maguire, had taken her to America to seek treatment, after donations flooded in from the public.

Messages of support have been posted on a Bebo page set up for the tot, who is currently in Chicago Children's Memorial Hospital.

Speaking yesterday, Gary said that his daughter, who also has cerebral palsy, had had a "very peaceful" night and, although there was no significant change in her condition, doctors were hopeful that she would improve.

"We hope that by lunchtime there might be progress, in the next couple of hours. She's holding out good.

"Overnight, she was on so much medication to try and help fight off the infection that her wee body was relaxed.

"Mekila stayed with her and I'm going back in today."

Gary said that this bout of illness was a major setback in Katie's ongoing battle against ill-health.

"Everything was going so well," he said.

"Now all this new medication could set back the whole process.

"Katie had been getting therapy which was keeping her brain active and in turn controlling her seizures."

Gary reiterated his call to the health authorities in Northern Ireland to provide "proper" facilities for children affected by epilepsy here.

"We are doing our part, and we have been to see the Health Minister.

"It is just unreal. If we took Katie home and she went into one of her seizures we have no confidence that the services in Northern Ireland could help her."

Gary said it would be an unreasonable request by the health minister to have to take his daughter over to England to avail of medical help there, and that if people living there had access to adequate services, so should those living in Ulster. Gary also added that it was now time for all children who are physically and mentally challenged to have better care and treatment to give them the best possible start to ensure a long happy life and to enjoy daily activity with there families.

"We haven't even thought about what this is going to cost us," he added, referring to Katie's treatment for her pneumonia.

He said that although the family initially came to the US to seek treatment for the infant's epilepsy, when they arrived, American doctors discovered that she had an acid reflux problem in her digestive system that was comparable to "drinking a bottle of battery acid every day".

He said: "She was rushed to get surgery on that and that operation cost $194,000 – and that was in just the first few weeks of being here.

"This will really put us in the red. But the wee one is more important, we don’t care about the money.”

Gary said that, more than ever, he was appealing to people in Ulster to continue digging deep into their pockets and donating towards his daughter’s life-saving treatment.

And Katie’s family and friends have already organised the next fundraising event – a 220ft abseil in the Mournes on Saturday, November 28.

If you are interested in taking part, contact Denise on 078 7736 3525.

 

Ulster child fighting for life in US

Katie Maguire

Published Date: 04 November 2009

AN Ulster toddler suffering from a rare form of epilepsy is fighting for her life in a US hospital.

Two-year-old Katie Maguire from Magherafelt was rushed to an intensive care unit in Chicago's Children's Memorial Hospital last week with what her parents believed was swine flu.

Tests, however, revealed that Katie, who has been the focus of a massive nationwide campaign to fund her treatment in America, was suffering from pneumonia.

Her worried father Gary McCann, who has been keeping a bedside vigil with his partner Mekila Maguire, told the News Letter that she was in a "very serious" and "critical" condition.

"This has come as a real shock to us all," said Mr McCann.

"Katie had been making great progress with her treatment here in America, and things were really looking up for her, but now we are being told that her chances are 50-50.

"We are just hoping and praying that she pulls through this."

The alarm was raised last week when the toddler's temperature soared, coupled with a series of severe seizures.

Earlier this year, Mr McCann met Health Minister Michael McGimpsey to seek better care for his daughter, whose treatment in America for her rare condition has been funded by generous donations from across the country.

The family have been travelling to the US for three-month treatment periods for Katie, who also suffers from cerebral palsy.

"The support we have received for Katie, since she was born, has been overwhelming," said Mr McCann.

"This treatment is very expensive and we don't know what the hospital bill will be, but that is not something we can even think about right now.

"We just know how much people back home care about Katie and we would ask for their continued support at this very difficult time."

Indeed, the online campaign www.keepbabykatieawake.com has drawn support and donations from across the UK.

This has been the hardest journey imaginable, we as Katie’s parents have been watching as our beautiful daughter develops her own personality, striving to reach her full potential. 
Being in America has given Katie the chance for life that everyone should been entitled too.

 For Katie our health service in Ireland continues to let her down.  We as Katie’s parents along with doctors in America have now established what care Katie needs to insure she will continue to strive in life...
With every return to Northern Ireland we have had meetings with the health minister to set up the services to insure a safe transaction for Katie with the care she requires to survive allowing us to return home fulltime to our family and friends.
These meeting have been unsuccessful in accessing this care for Katie to date.

In our last meeting with Dr Nordli a doctor who specializes in the care of children with seizures is termed an “eptologist” at Children’s Memorial Hospital we discovered that he himself had direct contact with a professor Helen Cross in Great Ormond street hospital, after discussions with him he agreed to contact her on our behalf to discuss Katie’s case.
On the 27th May 2009 we received an email direct from Dr Cross informing us that she would be willing to take on Katie’s epilepsy care and work directly with Katie’s pediatric doctors at home in Ireland. Most important also keeping the link with Dr Nordli in Chicago open.  We were overjoyed with this news this was the first step to getting home.
To set this care in place Dr Cross needed a referral from the doctors in Ireland to enable her to schedule an appt for to see Katie and set up the care required for Sept 09, but unfortunately after 15 weeks from the request was made no referral had been received, when we returned home in Sept we contacted Dr Cross directly ourselves to be told that unfortunately as the referral had not been received in time she was no longer in the position to see Katie until the middle of 2010 at the earliest, through no fault of her own.

Unknown to ourselves when we started this journey there was so much lacking in the care available to Katie at home in Ireland. 
Katie at present is receiving therapies by trained therapists of bobath or higher standard.  She receives therapy 2/3 hours per day five days per week.  PT, OT and speech. With out these therapies at this intense level Katie will regress leaving her seizures to increase putting her life in unnecessary danger. 
This has been proven to us on a number of occasions when we returned home, leaving us no other options but to return to the states where her seizures once again have been gotten under control and once back in therapies Katie continues to thrive.
At present the only therapy available to Katie at home in NI is 1 hour PT per week this is not at an intense level nor by a bobath trained therapist and would not sustain the progress Katie has made to date.
Northern Ireland we has now realized has nothing in place for to care for children 0-3 with intense PT, OT or speech and this does not change for children when they reach school age in special needs schools, at this age we have now been informed that Katie would only receive 1-2 forty five minute sections of PT per week at school and this is not would not be at an intense level. There is no OT or speech for feeding therapies available either.
On the BBC interview the health minister reassured us that the therapies were available at home in Northern Ireland. This is not the case.

Another meeting was set up in September 09 with the health minister to establish what step he had taken from our last meeting to set the therapies in place for Katie
 Unfortunately there have been no changes made to date. We were still unable to,get any information on what could be accessed at present that we may not be aware of for Katie in Ni, we were reassured that this information will be made available as soon as possible.  What he has proposed is for us to attend Linfield for an evaluation on Katie’s need, as our health service in NI does not recognize the care Katie receives at present as it is not within the EU.  
We feel that this is completely appalling but anyone that watched the BBC interview will have saw that our health minister addressed a worlds leading professor in epilepsy as Doug he did not even deserve the title of a Dr.
We know that without Dr Nordli’s care and expertise Katie would have died, so you can see how this angered us.
Even though we feel that we are being passed from pillar to post and that the health minister is avoiding the situation at present at home in NI we agreed to apply with his requests. 
We also contacted Lingfield ourselves to see what an assessment would involve and to our horror we have discover that they have no therapies available and no way of evaluating any child for the therapies they may need. Linfield is a special needs school placement that your child with cp can live in an institute environment from the age of five to adulthood.
In our own research  as to where we could get they evaluation carried by  trained therapists that our health minster would recognize we found the bobath center in London where they are equipped with the expertise and we have now informed the health minister that this service would be more suitable for to get the information he requires.
We have been now reassured by our health service that they will be working on getting these appt in GOSH and for assessments made available for us in Jan 2010.  Even though Dr Cross feels that this is in no way possible as she is booked full our health minister says it is?   
As to date there is no information on how much of the care Katie needs is going to be made available to her when the health minister receives this information.
We can only hope that he stands by his word to make the services Katie will  requires available at home in ni.
Until the services are put in place at home we as Katie’s parents are being left with no other options but to keep begging the public for the much needed funds that it takes to insure Katie can continue with the care she needs to stay alive and  progressing.
The cost of treatment and our accommodation here in Chicago has frightening but so worthwhile.  

Battling Katie Maguire makes amazing recovery in US

By Lesley-Anne Henry, Belfast Telegraph
Monday, 8 September 2008


Katie with her medical team in USA

A Northern Ireland baby being treated in America for a rare form of epilepsy is making “amazing” progress, her parents have said.

One-year-old Katie Maguire suffers from intractable epilepsy, which causes violent seizures each day.

But the Magherafelt tot was given a second chance at life after Belfast Telegraph readers raised much-needed cash to fund the life-saving journey to the States.

Gerry McCann and Mekila Maguire were forced to give up work to care for their desperately ill daughter and because the medical expertise was unavailable in Northern Ireland the distraught couple had to go abroad.

Although she is a year old, fragile little Katie has the mental capacity of a new-born. The terrible nature of the condition means she could not see, eat or swallow and had to be fed through a tube. But this treatment means, miraculously, she is making a recovery.

Speaking from Katie's hospital bedside in Chicago, her parents said: “It has been truly amazing. Eight weeks ago we travelled here full of hope and expectation for Katie's future. Katie's first procedure was to receive a 24-hour video EEG to determine the extent of her seizure activity. When this was completed we met with Professor Dr Nordli who explained that Katie had a significant problem under her frequent seizures.

The surgery took a gruelling two and a half hours

“Firstly, he needed to do more studies on Katie's feeding. Over the following two days of investigation and biopsy, Katie required to be heavily sedated. At the conclusion, it was shown that Katie's stomach did not lie in the normal vertical position but horizontally beneath Katie's ribs. Her airways and voice box were extensively damaged due to her severe reflux of the acid in her stomach. This regurgitated acid had been burning her throat and gullet, explaining why Katie lost the ability to shout and make normal baby noises.”

Then, on September 1, Katie celebrated her birthday, a milestone they had feared she wouldn't see: “A few days after that we had Katie's tests, and we were referred to a top paediatric surgeon, Dr Cathy Bareness.

“She sat down with us and explained everything about the operation and how, to begin with, she was going to reconstruct Katie's stomach and how she would then fit a tube to feed Katie comfortably.

“The surgery itself took a gruelling two and a half hours,” generating extra unexpected bills that may cost up to $100,000.

“Twenty-four hours after the operation, Katie was feeding comfortably. Her seizures have reduced by 50%. As a consequence her medications have been cut.”

“At last, we now have a baby girl who can now smile again and who responds to our voices. Katie has reached a milestone which we were afraid we would never see and we have every faith that our daughter will see so many more.”

Arriving in the USA.

Arriving in the USA was a great relief to us, the flight was the longest eight hours ever, and we had oxygen on board in the event of Katie going into seizure.  Thankfully we all arrived safely.

Within two days of arriving we had to take Katie to Children's Memorial Hospital because her feeding had deteriorated and she was bringing up most of her feeds. During this visit Katie went into seizure and was admitted to the hospital straight away.

 Dr Nordli set up Katie's first 24-hour video EEG so more information could be gathered on the types of seizures Katie was taking. 

Within one hour of this being completed Dr Nordli returned with the results. To our surprise he felt that Katie had an underlying condition that was contributing to the amount of seizures Katie was having at that time and recommended that we meet with Dr Cathy Barsness to have Katie's feeding fully investigated. 

 Later that same day we met Cathy Barsness, who, after examining Katie informed us that Katie was showing all the signs of reflux. Discussing the options and treatment she advised us to admit Katie to her department to have the necessary test completed to confirm her suspicions. 

Within a further two days we were given the results of all tests carried out confirming not only servicer reflux but also that Katie's stomach was not in a normal position.  Both of these conditions had gone undetected by Katie's medical team at home in Ireland. Tests also showed the reason why Katie had stopped babbling as babies do, the reflux was that bad the acid from her stomach had been burning away at her vocal cords and was going to leave scaring.

Only time can tell us if Katie will be able to use her voice again. 

The following morning Katie was on her way to surgery to have two operations carried out at the same time. First was a fundal placation, were a part of Katie's stomach was used to wrap around the opening of the stomach, so that when her stomach contracts the neck of the stomach would contract also, enabling Katie to feed without everything coming back up.

The second part of the operation was to insert a little Mickey button to allow us to remove the tube in Katie's nose.  

 Katie's recovery was a long slow process as her stomach was unable to hold any large amount of food and was going to have to be stretched slowly. They started by introducing 5ml of feed every hour and gradually increasing it over time.  As they increased the feed going through the Mickey button they reduced the amount of feed Katie was receiving through an IV drip into her arm.  It was six weeks before Katie recovered from her operation but the difference in the amount of seizures Katie was taking had reduced by at least 50 per cent.

The date arrived to attend Alexian Bros to have Katie’s long awaited  Meg scan completed. 

Doctors wanted to do another EEG scan at the same time as the brain scan itself.  Katie needed to be put to sleep while the scans were carried out. Unable to stay with her we were shown a room where we could wait the two and a half hours it would take for the whole procedure to be completed. 

Thankfully everything went to plan.  The results of the scan would be given to us at a later date due to it being a slow process in reading and gathering all the information collected.                                     

 Going to the appointment with Dr Nordli we were feeling physically ill, scared of hearing the results from the Meg scan and knowing that whatever we were to be told was final.  If he couldn't help us there was nowhere else to turn.

The Meg scan shows Katie's brain as if it had been cut into thin slices, giving the doctors information in great detail.  It had pinpointed the exact place in Katie's brain where her seizures were starting, it also had shown that her brain had not developed fully yet. This was because of the amount of seizures that were taking place and also the amount of sedative medicine Katie was taking.

It has also shown that the paths in her brain that enabled her to see had not been damaged,  leading us to believe that with the proper therapies Katie may develop enough sight to enable her to see. How much this will improve no one is able to tell - we can only hope. 

Dr  Nordli reassured us that from all the information that had been gathered and with proper treatment Katie's seizures  could be brought under control. Nothing he had seen would have lead him to believe that Katie was going to die from her cp. 

This overwhelmed us.  We then knew we had made the correct decisions, but it also made us angry as we had been told by her doctor back home in Ireland that Katie was dying. In fact they had no knowledge of her conditions and their treatment was killing her.

Dr Nordli’s plan for Katie's treatment was that intense therapies on a daily basis were needed to encourage the brain to develop. H e wanted to remove all the meds but one, which was for the certain type of seizure she was taking.  This would have to be done over a period of time as the withdrawals could cause pain and discomfort if done too quickly. 

 Over the following weeks Katie attended the pathways center twice per day for physiotherapy for speech and feeding.  Following dr Nordli treatment Katie’s seizures were now under control.

July 8th 2008

Why we can't wait any longer
Press release Issued by Mekila Maguire and Gary McCann - Katie's Mum and Dad