IMAGINE a magical journey to a mythical kingdom where the pink turrets of Sleeping Beauty’s castle touch the sky near Big Thunder Mountain.
Imagine taking a trip underground with the Pirates of the Caribbean or a Rocket Cruise to Star War Galaxy. And wait... there is ice-cream and candy floss on every corner.
Imagine getting a call to go to Euro Disney with lots of other children who deserve the trip of a lifetime.
Noah Myers, from Mitchelstown, and Aidan O’Brien, from Burnfort, got that call.
Cork City Hospitals Children’s Club made the two boys’ dreams come true.
“I had never heard of the charity before we got the call to go to Euro Disney,” says Sharon, Noah’s mother.
“Noah was mainly based in Crumlin Children’s Hospital since he was six weeks old, and with Enable Ireland in Cork. Up until two years ago, we hadn’t much to do with Cork hospitals. Then we were referred to the Mercy Hospital in Cork.
“Noah came to the attention of the Cork City Hospitals Children’s Club through social media and he was nominated by a volunteer for the charity to go on the trip in September,” says Sharon.
“The lady said Noah deserved to go on the trip. We wondered; ‘Why us? How did that happen?’”
The Myers thought they might all be going a nice day out — not on a fairy-tale journey for three magical days and nights to Paris.
“We thought, ‘Oh, that’s nice’. We didn’t think it was a massive trip. Maybe we were going to Dublin Zoo or somewhere else nice. We got a fantastic surprise when we knew we were going to Euro Disney. We couldn’t believe it,” adds Sharon.
The unexpected call came early in the summer.
“We got the call in June,” says Sharon. “It was nothing short of amazing. Usually it is only the child themselves who gets to go on the trip. But his big sister, Sophie, aged 12, and I, were lucky enough to get going with Noah too.”
What did Noah think about travelling to the magic kingdom?
“He knew it was a big deal,” says Sharon. “The rollercoaster ride was in his head from the start. He couldn’t wait to get there.”
Noah had one stipulation. Sharon laughs.
“He didn’t want any photographs with any of the Disney characters. Noah is his own man and he knows his own mind. That’s for sure.”
Noah will turn seven in March. He was born with a rare syndrome, Escobar Syndrome, a genetic condition whose characteristics include lack of muscle movement. It typically affects the neck, fingers and elbows and knees. It also involves restriction of the spine.
“Noah will be a wheelchair user all his life,” says Sharon. “But that’s OK. With a little bit of determination, some craziness and a sprinkle of luck, we want to show the world that disability does not mean the end of a fulfilled and happy life,” says Sharon.
“We have great support from family, friends and my in-laws. It makes an awful difference to have good back-up. Being surrounded by family is really great.”
Noah loved the thrills and spills of Thunder Mountain in Disney, but he had climbed a mountain before. Sharon smiles.
“Yes, last August, we did climb the Galtymore with him. Our aim was to show that nothing is impossible. We want Noah to believe in himself.”
And he does.
“He is thriving at school, Glenahulla National School, Mitchelstown,” says Sharon.
Noah is in first class.
“He is good at reading and he loves maths. Noah loves getting the solutions right.”
Like his mum and his dad, Denis, Noah loves the great outdoors.
“Noah loves his games as well, and we limit screen time during school days,” says Sharon, who reveals that Santa is bringing him a games console.
“We love nothing better than getting out in the fresh air and being adventurous. Noah may be physically challenged, but at the end of the day, that shouldn’t stop him enjoying getting out and about and enjoying nature.”
The family enjoyed their trip of a lifetime to Euro Disney.
“Noah went on all the rides,” says Sharon. “It was a real novelty for him staying at the Wild West themed park.
“Noah is small for his age and limited in what he can do. But he gave it a go. He adored the rides. The Lego store was a favourite too.
“It was wonderful meeting other families who understood what it means to have a child with an illness, but not talk about it,” says Sharon.
“The trip was almost retreat-like, where you get to talk to other families, discussing what is truly important in life and how we deal with things. It was an opportunity to forget any troubles we had.”
The family have indelible memories from their magical journey.
“We’ll never forget it,” says Sharon. “We made friends for life. I cried when we got back to Cork Airport. Sophie wanted to cry too, but she didn’t. The trip focused on the children’s siblings too and made them all a big part of everything. It really was a dream come true. The Cork Hospitals Children’s Club charity is amazing. The volunteers are fantastic.”
And the dream isn’t over yet.
“We are all off to Fota on December 7 to see Santa,” says Sharon. “The charity organises the visit to Santa at Fota every year so we are really looking forward to that and meeting up with new and old friends.”
There is also an important birthday in the Myers house over the festive season.
“Sophie will be 12, so there will be a big gathering.”
“It is good to take pleasure in the big and the little things this time of year.”
Aidan O’Brien’s dad, Steven, does amazing things, like climbing a ladder equivalent to the height of Mount Everest, without leaving Cork. That fund-raising effort for the Cork City Hospitals Children’s Club helped send 40 children to Euro Disney in September.
It must be pretty cool having a dad in the fire brigade?
“Aidan thinks it is cool and very exciting,” says mum, Vickie.
He has a pretty cool uncle too. Tommy Barrett, Vickie’s brother-in-law, who donated a kidney to Aidan in February.
“Aidan was on the donor list for a year and a half,” says Vickie.
“We sat by the phone day and night waiting for the call to tell us a match was found for Aidan to have a kidney transplant.”
Aidan’s young life was impacted by a serious illness, focal segmented glomerulosclerosis (FSGS). The youngster underwent dialysis for 11 hours a day.
“Nobody really knows why children get it,” says Vickie. “It could stem from a bad prior infection. The immune system goes into overdrive. Pinning down the cause of the condition is difficult,” says Vickie.
“Aidan was diagnosed with FSGS when he was four years old. When my sisters and then their husbands got tested for a possible match to donate a kidney to Aidan, Tommy was the match. When Tommy found that out, he just went ahead and did the operation. Aidan and Tommy are very close. They have a special bond.”
Aidan, from Burnfort, who is nearly 10, was frantic with excitement when he discovered he was going on a trip of a lifetime to Euro Disney, Paris.
“We all got to go,” says Vickie — dad Steven, Aidan’s sister Kate, aged 15, and brother Robbie, aged 13.
“The trip lifted our spirits,” says Vickie. “It was a great opportunity for the parents to chill out. We got to meet lovely people and we got to share our stories. Meeting the doctors and nurses as well as the volunteers was amazing.
“Aidan was on Thunder Mountain every day. He absolutely loved every minute of it.”
Aidan deserved to go to the magic kingdom.
“We were thrilled he was nominated to go to Euro Disney. He was very good when he was on dialysis,” says Vickie. “The hardest thing was limiting his drinks. He was constantly thirsty. When he was on outings with his pals to the cinema, they all brought their drinks with them. But Aidan couldn’t have any drinks. He was limited to only 75mls of liquid per day.”
Aidan is still monitored to ensure that his blood levels are stable and that his new kidney is protected from disease.
“There is always the danger that FSGS will come back,” says Vickie. “We watch him like a hawk. After the kidney transplant, Aidan had to travel to Dublin three times a week for plasmapheresis, a procedure that removes the plasma portion of the blood where the anti-bodies are located,” says Vickie.
“He was very brave.”
Brave like his dad.
“Yes,” says Vickie. “He is a typical boy. He loves fire engines and vintage cars. He loves old cars.” He can go swimming now too.
“Aidan loves swimming; he goes regularly to the pool near us, in a Mallow hotel.
“He is flying it. He can swim a full length of the pool now.”
Aidan is also a good student — he is a fourth class pupil in Burnfort National School. Maths is his favourite subject.
Uncle Tommy isn’t the only relative Aidan has a special bond with. His cousin Lisa, who lives two doors from the young boy, was born on the same day as him, December 5. They will both go to see Santa at Fota together on December 7.
“There is great credit due to the organisation. They do great work and light up children’s lives,” said Vickie.
ABOUT THE CLUB
Cork City Hospitals Children’s Club was founded by John Looney in 1992, whose three children suffered health difficulties in their childhood. The small group of volunteers took a group of deserving children on the trip of a lifetime, to Disneyland, Paris.
Since then, the charity has gone from strength to strength, with over 40 volunteers. Sick children from CUH, the Mercy Hospital, St Gabriel’s, and Cork Association for the Deaf go on annual trips to Euro Disney, Christmas at Fota and a Monster Egg Hunt at UCC.
To donate: Bank of Ireland, Wilton, Cork: SC :90-28- 05 A/C:34653800