Convoy schoolgirl Mikaela Breen was chosen by Spina Bifida Ireland to represent all Irish members for World Spina Bifida Hydrocephalus day yesterday.
Mikaela was selected to have her story told to highlight the day.
Mikaela, who attends Scoil Bhríde in Convoy will be eight in January and her parents, Sinéad and Chris, now have to decide on surgery to eliminate risks to her kidneys, but which could reduce her mobility.
Mikaela was born prematurely and was diagnosed with spina bifida.
“The hardest part was that we did not know if she would ever walk; that was the hardest part of the diagnosis. When Mikaela was 19 months, she started to take a step or two with a frame,” mum, Sinéad, remembers.
“She had a turn in her right leg, it was frustrating for her, but boots and physiotherapy corrected this. She still has a weakness in her leg, but you would not know she has a slight turn.
“Mikaela’s tethered spinal cord is the biggest challenge we are facing because as she grows, it does more damage. Urology is our biggest concern as her bladder, kidneys, and bowel are compromised.
“We now have to decide on surgery for her tethered cord. There is the risk of mobility damage but it will help urology wise.
“It is a trade-off. We have to decide what is the right thing to do, weigh one against the other. We need to assess the risks and we need to do it as soon as possible.
“We are hoping to take Mikaela to America before Christmas for tests – you have to wait years for them here in Ireland – so the only option is to take her abroad to be seen by one of the best teams in the world.
“This is our greatest challenge and we hope to make a more informed, rational decision after the tests as we will have the risk percentages.
“She cannot keep going the way she is, so we might have to take a risk with her mobility as she has to have healthy kidneys to live.
“Surgery will transform Mikaela’s life and I want her to be as independent as she can be.
“I want her to strong willed as well and do things for herself but she needs healthy kidneys for that.”
Sinéad admits that she and Chris were ‘horrified’ when told Mikaela would have to use a wheelchair, but now says ‘it has proved a Godsend’.
Sinéad says: “We can now go on family trips and shopping trips. We embrace it now to be honest as it has given the whole family – including Aleesha Jane (9), Tiernan (6) and Christopher (2) – greater independence as we can go to more places.”
Mikaela’s own strength of mind and positivity has been a real beacon for the family.
Sinéad says: “Mikaela is such a happy perfect child. She is amazing, so loving and affectionate; a treasure. She is a tough cookie and very resilient.
“She hates catheterisation as she has mobility she feels it more than other people with spina bifida who may not have sensation.
Mikaela with Jason Quigley’s NABF middleweight belt
“However, we try to tackle everything positively; you have to look at life as glass half full. When we go to Temple Street Hospital, we know we are one of the luckiest families.
“There are so many other families with greater challenges. If they can keep positive, why should we not be? You cannot pity yourself, you have to suck it up and get on with it.”
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