‘If we look after her we’ll have her for longer’
Nicola O’Leary from Limerick is one of them.
The seven-year-old was born with a life-threatening condition called West syndrome as well as cerebral palsy. Nicola’s mother Linda said they live in constant fear of the next thing going wrong.
“Nicola is like a ticking time bomb, we can never relax. We are always on watch for the next problem.”
When Nicola was just two months old when things first started to go wrong.
“She began suffering uncontrollable seizures around the clock. The seizures lasted nearly four months until they were eventually controlled.”
Nicola was eventually diagnosed with West syndrome, a rare debilitating epileptic disorder that manifests in infancy.
There is no known cure for either cerebral palsy or West syndrome leaving her life expectancy unknown.
Her mother Linda said it is not something they dwell on.
“It’s now a weekly battle to keep her well. We just try to get over each hurdle. I feel that if we look after her as best we can then we will have her for longer. But we don’t know.”
Nicola, who has never been able to walk or talk, has got progressively worse in the last year and is now unable to feed herself
Despite all the challenges facing Nicola, her family said she is a really bubbly person who loves to be the centre of attention.
“She loves music and enjoys all the songs in the charts but her biggest love is cookery shows, especially Come Dine With Me,” said Linda.
Aishlinn Roisín Quaid from Limerick is another recipient of the courage awards.
Aishlinn is only four-years-old but she has faced more challenges than most people will experience in a lifetime.
She has fought a whirlwind battle since being diagnosed with a brain tumour at only six-weeks-old.
She began vomiting and making strange eye movements. She was only ten-weeks-old when an MRI revealed she had a massive brain tumour.
Aishlinn was quickly admitted to hospital for an operation but because of the location of the tumour surgeons could only remove a portion of it. The family were told that it was a slow-growing tumour and Aishlinn wouldn’t need anymore surgery for a few years.
However a scan on February 2008, one year later, revealed that Aishlinn’s tumour had returned and was twice as big and very aggressive.
Aishlinn’s dad Eamon said that this was very difficult to take.
“They operated again and took out 40% of the tumour as anything more would have been highly dangerous,” he said.
“She was so small chemotherapy and radiography were just not an option. We were given a terminal prognosis.”
“The rate of growth of the tumour was rapid. They put her on anti-vomiting medication and she began getting palliative care.”
Aishlinn was given six months to live but after a year she wasn’t showing signs of deterioration.
A scan revealed that the tumour had disappeared but a large cyst was in its place.
“We were delighted to hear that it had vanished. They drained out the fluid from the cyst and inserted a shunt. The doctors were hopeful and more upbeat about the outcome.”
However the family’s hope that an end was in sight was diminished once again when a further scan showed that the tumour was growing back aggressively with some smaller tumours located around it.
This time doctors were not happy to operate.
“The radiotherapist said that the dose needed to tackle the tumour was too large and could affect the workings of her brain.”
Aishlinn’s prognosis is terminal and she is now under palliative care.
Eamon said that despite all the difficulties and challenges that lay ahead they are very excited about the ball and the trip to Disneyland Paris.
“We want to create as many memories as possible. Aishlinn has been out searching for the perfect dress. We are all looking forward to the ball.”
Aishlinn who loves music, especially Adele, will be joined at the ball by her parents and grandparents who help care for her.
Eamon said Aishlinn has never let her illness dampen her high spirits and she is a favourite in her creche.
“Everyone at the creche comments on her happy, friendly nature. She greets everyone with a smile and a big hug. She is so affectionate to everyone she meets.”
Eamon said that initially the doctors were cautious about her travelling to Paris.
“They said if we are happy to travel with her then to go for it. We want her to get this trip and to have the memories of it with her. Aishlinn is a big fan of Tinkerbell so we’re looking forward to her meeting her star.”
TONIGHT, eight of the country’s bravest children will be honoured at the annual Share a Dream’s National Children of Courage Awards.
Attending a ball in Limerick, the children also win a VIP trip of a lifetime with their family to Disneyland Paris. The recipients are:
* Kate Crowley from Dunkettle, Co Cork, was born with the very rare condition Connadi Hunerman Syndrome. Kate’s challenges are bone related and she has significant respiratory issues.
* Brooklyn Kerley from Dundalk, Co Louth. She is eight-years-old and suffers from Spina Bifida and Hydrocephalus. In the last four years she has undergone more than 28 surgeries.
* Jason Lorrigan from Kildysart, Co Clare, who was born not being able to walk or talk. The now seven- year-old suffered a huge seizure followed by a heart attack two years ago. His parents were told he wouldn’t survive but he has defied all odds.
* Liam Heffernan from Castlemaine, Co Kerry. He has the terminal illness Batten’s disease that took his sister’s life earlier this year. Liam, who is eight-years-old, has displayed overwhelming courage and bravery throughout his illness.
* Matthew Flynn from Headford, Co Galway is suffering from Rasmuesins disease and due to the non-stop seizures, Matthew had to have half his brain removed. Due to this Matthew has also lost power in his right arm and is now in a wheelchair.
* Aaron Redmond from Naas, Co Kildare was diagnosed with leukaemia, Neurofibromatosis and Optic Giloma at just 11-months-old. Aaron, now six-years-old, had to have a partial amputation of the left leg.
* Nicola O’Leary from Clarina, Co Limerick was born with cerebral palsy. The seven-year-old was later diagnosed with West Syndrome, a rare debilitating epileptic disorder that manifests in infancy.
* Aishlinn Roisín Quaid from Dooradoyle, Co Limerick was diagnosed with a brain tumour when she was just six-weeks-old.
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