Spina Bifida Hydrocephalus Ireland (SBHI) is 50! 2018 marks 50 years since the national association was formed and everyone is looking forward to a celebratory year ahead.
SBHI is a national organisation supporting more than 2,000 people who know spina bifida and/or hydrocephalus to be a reality in their lives.
During the 50th Anniversary year, SBHI will continue its work of supporting thousands of individuals and families across Ireland by delivering unique services which ensure that everybody affected receives the best support available to them. This is achieved through a team of Family Support Workers, a Youth and Respite Team, Education Training work, and through the Resource Centre, Clonshaugh.
Together these professionally trained staff offer comprehensive support to everyone living with spina bifida and/or hydrocephalus across Ireland.
In addition to this core work, plans are afoot to mark this milestone Anniversary and celebrate the achievements and development of SBHI over the past 50 years with a number of events.
As this is a ‘Golden Anniversary’, a gold version of the SBHI logo will be launched which will be used in all promotions and publications throughout the year.
The Annual Conference and AGM, being held from 25th to 27th May in City North Hotel, Gormanstown will afford the Board of Directors, members, staff, and volunteers a wonderful opportunity to look back over the past 50 years, celebrate the present, and look forward to the future.
SBHI is fortunate to have wonderful people who come forward to volunteer to fundraise year after year. One of the current charity supporters, Stephen Martin of the Marathon Man to Ironman Challenge, is organising a 50th Anniversary Family 5k & 10K Fun Run in Corkagh Park on Saturday, 30th June. More information on this event will follow.
Also throughout the year, the hardworking officers in the eight branches around the country – Donegal, Mayo/Leitrim/Roscommon, Louth/Meath, Tipperary, Dublin, Kildare, Wicklow, and Wexford – will host a series 50th Anniversary fundraising events.
SBHI is extending the established golf fundraising efforts for 2018. The annual SBHI Packie Bonner Golf Classic will be complimented by an additional qualifier event. The SBHI Golden Anniversary Golf Classic will also be hosted by SBHI Patron and Irish goal-keeping legend Packie Bonner at Palmerstown House Estate Golf Course on Thursday 16th August.
On Thursday, 16th August, 25 teams, the winners of Golf Classic Qualifiers held in clubs all over the country, will compete over 18 holes of golf followed by an evening meal and presentation.
The following day, SBHI will return to Palmerstown House Estate where 32 teams will take their opportunity to compete to win the annual classic and enjoy an evening meal, charity auction, raffle and presentation. Entry for the Packie Bonner Golf Classic will open in February.
To keep updated on our 50th Anniversary celebratory plans and events throughout the year, log onto www.sbhi.ie or follow us on Facebook, Twitter, and Instagram on @SBHIreland.
38-year-old Teresa Ryan, who lives with spina bifida, is determined to overcome all obstacles to succeed in her ambition to work in a secretarial job.
“I am not going to give up until I secure employment in a secretarial position,” says Teresa, who lives in Enniscorthy, Co. Wexford.
Teresa has always enjoyed learning and has spent her adult life in continuing education. A past pupil of St Senan’s National School and Colaiste Brid and Enniscorthy Vocational College, she says that she always liked and enjoyed school.
“I really liked going to school, I enjoyed learning and making good friends. I never encountered any problems or impediments being a wheelchair user and I had really positive experiences in school,” she says.
“I passed the Leaving Certificate Applied and I was really pleased with my results.”
After school, Teresa worked in Enniscorthy Community Workshop for three years and then completed a number of computer courses. Other work experience, including an eight-week stint in the 1798 Visitors Centre in Enniscorthy, sorting filing in the office, renewed her interest in secretarial work.
This month will see Teresa completing a one-year course in computers with the Irish Wheelchair Association (IWA) in Gorey which she says has been a very positive experience for her.
“While it was a computer course, we did a bit of everything and even went on days’ out. It has been great experience and has really boosted my confidence and my expertise,” she says.
“It has given me the confidence to sign up for a higher skills course in computers and maths. This is another one-year course being run by Enniscorthy Community Workshop and my goal is at the end of this course, I will secure a job.
“I really want to work in an office as a secretary but it is so difficult to find work, not because I am not capable of doing the work but because so many buildings are not accessible.
“Inaccessible buildings really limits the number of jobs to which a wheelchair user can apply for. Every building should be accessible and this is a regulation which really needs to be brought into being and rigorously enforced.
“I am enjoying all the continuous education that I am doing, however, I am doing it all with the aim of getting a job and I will not give up until I get a secretarial job.
Five-year-old Éanna Doyle, who is living with spina bifida and hydrocephalus, is not yet attending mainstream national school, however, his teacher at Scoil Mochua Special National School in Clondalkin believes that he will in the future.
Éanna, who is from Sallins in Co. Kildare, is doing really well with his mum Caitriona praising Scoil Mochua for being an “amazing” educational facility.
“The supports are there to give him everything he needs and he is so happy. He has his teacher Anthony, three SNAs, a nurse to do his catheterisation, a physio, and an OT for speech and language,” says Caitriona.
“If he was going to mainstream school now, we would be constantly taking him out of class for all these appointments.
“Also, there are only six in the class, so it is pretty much one-to-one care and attention.
“If Éanna had started in mainstream school this year, there is no way he would be able to cope with the class size and noise levels.
“In Scoil Mochua, every child is at different stages of development and they are all being looked after individually to their level of development as well as a group.
“While he is not ready for mainstream education yet, his teachers think he will be able to get to mainstream at some stage - maybe not this year or next year but at some point in the future.”
Accessing Central Remedial Clinic (CRC) services since he was six weeks old, Caitriona says that Éanna was “automatically in the system”, so he was accepted into playschool for two years before starting in Scoil Mochua last year.
“He loves it, he is very comfortable going into school as he knows everyone,” says Caitriona.
“He is becoming more independent in himself and he wants to be independent, he wants to be able to do things for himself.
“Scoil Mochua encourages independence also; he is told to hang up his coat and put his lunch away and do things for himself.”
Caitriona says that it is very encouraging that education can be such a positive experience even if your child has to attend a special school. While the majority of children with spina bifida go to mainstream schools, she says that for children like Éanna, who needs a little extra help, it is great to have access to education in a special school.
While Éanna is striving to be an independent boy, he is quite accepting that there are things that he will not be able to do.
“He knows now that he cannot walk. He wants to walk and run and asks why he cannot and when it is explained to him he accepts it without crying or getting upset,” says Caitriona.
“I try not to look too far into the future, I find that would be hard. I take each day as it comes, that is the way we – Éanna’s dad Mark and I - have always done it. I deal with the present and let the future look after itself as I do not know what kinds of things will happen in the future.”
Éanna was Caitriona and Mark’s first baby and they found out when Caitriona was 20 weeks pregnant that their baby would have spina bifida and hydrocephalus
“At about 32 weeks, we were told that he would need a shunt as his hydrocephalus was on the severe end of things.
“Éanna had surgery the day after he was born for back closure due to his lesion and had VP shunt inserted,” says Caitriona.
“We got our heads around Éanna’s diagnosis very quickly, we took a few days out of work to get our heads around the diagnosis and come to terms that our baby was going to have special needs. We decided to think positively and get on with things.
“Éanna was in and out of A & E for the first few months of his life for different reasons. We got him home from hospital two weeks after he was born and the next day he was back in hospital as his back was leaking cerebral spinal fluid.
“That happened a few times and he had UTIs and seizure-type activity where his legs would continually jerk for up to two days at a time for a number of months. The doctors never got to the bottom of this but thankfully it eventually stopped.
“All in all, we have been very lucky Éanna as he is still on his first shunt. He had quite a high lesion so his mobility is not good.”
Éanna has Agensis of the Corpus Collosam which means that the area of the brain which connects the two hemispheres is missing; an under-developed cerebellum; a cyst on the back of his brain and Chari Malformation.
“He cannot sit unsupported which would be unusual for kids with spina bifida. I think the problems in his brain, especially his under-developed cerebellum contributes to his balance issues and is the reason he cannot sit,” says Caitriona.
“I do not know if he ever will be able to sit unsupported. We travel to Limerick every week for private physiotherapy and his upper body strength is very strong; he is definitely coming on.”
When Ciara O’Donnell stopped comparing herself to other people and gave up trying to ‘keep up with the Joneses’, she found that feelings of upset and frustration just disappeared.
Judging herself by her own standards and capabilities rather than other people’s means that Ciara can now calmly and happily do what she wants to do in the stress-free knowledge that what she chooses to do, she will do well.
“I have a reputation for not listening when I am told ‘no’. I am incredibly stubborn, if I want something badly enough, I will say that I am going to do it,” says Ciara.
“However, I have to believe that I can do it and I have to work for it.
“I might have to work twice as hard to learn skills or do what an able-bodied person is doing. Now, unlike in the past, I take my time and do it – I now longer beat myself up.
“I used to compare myself to other people and say: ‘why can I not do that?’
“When I did my degree in social care, I could not do third year, this confused me as to why I was not as able as others. But I have my diploma and that is where I needed to be, that is my level of achievement and I had to be okay about that.
“So, I stopped beating myself up. I can always go back and do a degree in my timeframe if I want to,” she says.
“As a person with spina bifida, I also have some other medical issues which affect me from time to time. It can take longer to do things like getting ready in the morning sometimes, if I am unwell.
“That can be frustrating at times. But the way to look at it is, if you mind yourself, take time to work things out in your own time, you will make life easier for yourself.
“Just because you can do something does not always mean it is the best thing for you. I thought I had to keep up with everyone else. Now I do what I want to do and know what I do I will do well.”
Ciara has just proven that she can do what she wants to do – and do it well – as she has just qualified as a make-up artist.
“I think confidence is an issue for a lot of people with disabilities and from a woman’s point of view, I think some days we have enough to deal with medically without being conscious of bad skin or other things that can be camouflaged if needed.
“My hope is to work with women who have disabilities in my spare time in the future. “
Ciara, who is from Arklow, was born with spina bifida and hydrocephalus. She took part in a trial at birth which she says was relatively successful for her hydrocephalus. While, she still retains elements of hydrocephalus she feels that this condition does not impact on her life.
She attended mainstream primary and secondary schools and having completed a secretarial course after her Leaving Certificate, secured employment with Wicklow County Council.
“I am now a Grade 4 Assistant Staff Officer - I was promoted in January – I work in the law department as a legal secretary and carry out supervising duties as well,” says Ciara.
“I work Monday to Friday, but take Wednesdays off from a health point of view and to manage doctors’ appointments.
“I find that this is working really well for me. The local authority facilitates me wherever they can. We have a disability officer onsite and she is very good.
“With older buildings, sometimes very little can be done from an accessible point of view and there are budget restrictions. There was staff training recently but the building was not accessible so I have been told in the future I will receive one-to-one training on site.
“Wicklow County Council is doing its best and management are learning. I am the only wheelchair user in the building, there are people with other disabilities such as sight and hearing impairments. The County Council has always maintained its 3% quota of staff with a disability which is good really.”
Living her life by adopting her parents’ philosophy of ‘no limits’, Ciara is proud that she has accomplished a lot in her 37 years.
“I am happy with what I have done. Now I am older I have to decide what I want as I cannot have everything - I do not have the energy anymore!” she says.
Apart from her work, the things that Ciara likes to invest her energy into is spending time with her family and many friends; pursuing hobbies and enjoying herself in her spare time. She loves to cook, go out for coffees, listen to live music. Ciara also loves animals and enjoys spending time out with her two dogs.
She says she cannot stress the importance of her parents and friends enough in terms of their love, support and friendship, and the happiness and joy they bring to her life.
Learning to drive was the biggest link to her own independence and Ciara enjoys getting out in the car for a spin and seeing where she ends up!
Living independently in her own apartment since 2005, Ciara met her husband Keith on a blind date. They were going out for about a year when Keith moved in with Ciara and they got engaged and married a couple of years later.
“We bought a house the week after we got married, the whole place had to be adapted which took about two months to complete.
“Panic had set in at times as I was worried we wouldn’t find a suitable place that worked for both of us. I needed a bungalow and they are in short supply! It was a busy time but it all worked out in the end and we are very happy over two years later.”
It is vital for the well-being of people with disabilities that those without health issues take the time to understand and accept those who do, 29-year-old Majella McCarthy believes.
Majella, from Dunmanway in west Cork, lives with Hydrocephalus and says that she finds it very frustrating when people display a lack of courtesy and understanding towards a person with a disability.
“I find learning very hard as it is difficult for me to retain information – I am not as fast as others – and a good few people do not include me in things,” she says.
“Maybe it is not always because of my Hydrocephalus, it could be to do with my personality, however, more people need to understand the situation with people with health issues and disabilities and be more inclusive.”
Loneliness, isolation and negative thoughts about health issues can lead to people with disabilities withdrawing into themselves and shutting themselves off from social interaction.
Majella feels that it is very important for a person’s mental health to try and reach out and talk to someone when they start feeling like withdrawing.
“But they have to have someone they feel they can reach out too, so that it why is it so important that people with no health issues accept those who do,” continues Majella.
“You can only overcome the negative and get back to a positive head space by going out more and doing things. I am lucky that I have a friend who is close to me and will ring me and make me come out and talk and do something like go for a walk.”
However, Majella was not always as positive and had to work hard to accept her health issues. She was frustrated and angry and found it hard to accept how life had turned out for her.
“I am getting slowly to a place where I think maybe things are actually not so bad for me,” she says.
“I am slowly realising that there are a lot of people out there who I used to think have it all, but behind closed doors they have not.
“I have thought that for years illness ruined my life but my mother Nora has tried to tell me that I am a miracle to have lived.
“I have learnt to deal with my health problems as best I can. Sometimes I think I could be much worse off, other times I think I could have been spared some of these problems.”
In doing the best that she can, Majella has recorded great achievements in her life by passing both her Junior and Leaving Certificates despite her difficulty in retaining information. And she is currently writing a book on her life journey which she plans to get published.
She has learned how to drive and is enjoying the great independence that having her own car is bringing to her life. She drives to and from her part-time job as musical therapist in a nursing home in Clonakilty.
“I am there over three years. The people I work with are lovely and friendly. The patients look forward to me coming. I play the accordion and violin and sing for them and so many times they tell me how much I brighten their day.
“Working has given me confidence. I have learned how to stick up for myself, I have become more independent.
“I have learned how to converse more with people. I realise that I am wanted and have a purpose in my life. I am so grateful I have a job that I enjoy.
I have a habit of comparing myself to others like my twin brother Daniel who is in Australia but since I joined SBHI I am seeing things differently.
“I have learned that my negatives in life must be turned into more positives by me.
“We have to try to think positively and plod on. It is so easy to feel hard done by in life. Life can be difficult for everybody in so many different ways.”
When Gerry Maguire joined the civil service 36 years ago there was a quota to employ 3% staff members who have a disability. The target is now to bring that quota up to 6% within the lifetime of the current government.
“This does not sound like a lot, but we are trying to get as many people as possible with a disability into the workforce for the first time, or back into the workforce,” explains Gerry, who is a Special Adviser to Minister Finian McGrath, TD.
“A lot of people with a disability are concerned that they will lose benefits if they take up work, trying to make sure that they are informed and know that they will not lose benefits like their travel pass.”
Gerry, who lives with spina bifida, says that the Government must also communicate to employers that there are grants available to accommodate people with disabilities and to encourage employers to take people on with disabilities.
“I said to the Taoiseach recently that it is good that we now have a Disability Inclusion Strategy. It is good to have it but changing employers’ mind-set is a totally different thing and no strategy is going to do that,” he says.
“That can only be done by giving people with a disability a chance.
“I am conscious of the responsible position I have as I have had to prove myself all through my life – some people thought I got the job as Special Adviser because of my disability, not because of my ability.
“There is still that mind-set after all these years. I have to work on changing people’s perception; getting them not to see the disability, but to see the ability - that is the key and a lot of work needs to be done to achieve this goal.
“This is something which we, as people with disabilities, need to work on ourselves. People ask me when they are applying for a job do they need to say have a disability.
“I respond that it is a personal choice, however, why go in on the back foot, letting employers have the option to be prejudiced before they even meet you.
“There are grant facilities available if employers can be bothered, but it seems easier to take an able-bodied person on even if they are missing out on an incredibly talented person with a disability.
“So many people with disabilities just want a fair crack at the whip and to be given a chance.”
Working continuously since he was 19, Gerry says that he has not experienced the feeling of frustration of not working, however, he can understand that it must be terrible.
“Working puts money in your pocket and gives a sense of value and of pride,” says Gerry.
“The first time I brought home in a pay packet to my parents I was putting money into the family pot for first time. I was playing an active role in the family and I had a great sense of pride in contributing to my family.”
In 1981, during UN Enable – International Year of Disabled Persons the civil service ran a competition for people with disabilities to apply as clerical assistants.
“I had been applying for jobs since doing my Leaving Certificate in 1979 and was getting sick of getting refusals, some of which I knew were purely on my disability, so I thought this was a great chance to get a job,” recalls Gerry.
When he arrived at the exam centre, he realised that thousands of people, in centres all over the country, were applying for just 40 jobs. Gerry did get called for interview and was asked if he was to get the job, what kind of special exemptions would be needed to accommodate his disability.
“I got really thick with them, saying that I went through 12 years of school without exemptions so why would I need them now,” says Gerry.
“I thought I had screwed it up but then I got word that I has secured one of the positions and I was thrilled.
“I was appointed to the Department of Health on 1st April 1981 as a clerical assistant. There was an embargo at the time, so it was eight years later before I got a chance of promotion to clerical officer, then executive officer, then higher executive officer.
“Last year the Minister for Disabilities was looking for a special adviser and I put in my CV. I thought nothing more of it, then I got called by a HR company for an interview to whittle the competition down to three or four candidates.
“A couple of weeks later I was told I was one of the four being interviewed by Minister McGrath and then on 1st September 2016 I was offered the job.
“I was told that the reason why I was given the job is that I came across as someone who would not take any nonsense from anyone!”
In his role as Special Adviser, Gerry represents the Minister at functions when he is unavailable; attends the weekly Monday meetings of all advisers to discuss the government agenda for week.
With Minister McGrath’s portfolio running across three departments – Health, Justice and Social Protection – Gerry has to fact check more than 100 Parliamentary Questions; attend Cabinet committee meetings and meet with different groups and individuals on regular basis.
“It is a very responsible job, I have to have my facts right all the time. You cannot bluff your way through or you will be found out very quickly,” says Gerry.
“I complain that there is not a lot of time for a personal life, but really I love just love my job.
“There is something about going through Leinster House and Taoiseach’s Department and thinking of the history of the place and the people who went before. You really feel a part of something, of being involved in the machinations of the country.
“Some people think that because I have a disability that I can sort out all problems for people with disabilities overnight. But you cannot solve everything; I have to be aware of the budgetary constraints as we do not have a bottomless pit of money.
“I take a lot of things home with me in my head. I wake up during the night thinking about a particular person’s problem which has been brought to my attention,” says Gerry.
“I do not know if I can change that, but I do not know if I want to change that as it shows I care and I want to do something while I am here in this role - I do not know how long the Government will last and if there is a different Minister, I might not be kept on.”
Gerry says that he feels a sense of responsibility to the people and groups campaigning to have UN Convention for the Rights of Persons with Disabilities (UNCRPD) ratified.
“However, people do not realise the amount of work that is going on in the background to move it forward to try and get the legal processes in place,” he says.
“Other countries have ratified it without the legal processes in place and it is not worth the paper it is written on – I want it to mean something for people with disabilities.
“For example, the Inclusion Strategy has been set up in such a way that it will address things like having to give 24 hours’ notice to Irish Rail with travel plans.
“The Department of Transport recently gave the Minister a briefing saying Irish Rail is bringing it down from 24 to four hours’ notice,” he says.
“They wanted pat on the back for this but I told them when they bring it down to zero hours’ notice, it will be a success - I will call out on it when needs be.”
During her secondary school years Una Bonner knew that as a wheelchair user, she would be somewhat restricted in the career choices she could chase.
Fortunately for her, she was not frustrated by this but able to accept it as the career she was interested in – secretarial work – was open to her to pursue.
Having successfully completed her Leaving Certificate in Rosses Community School in Dungloe, Co. Donegal, Una, who lives with spina bifida, was accepted onto a degree course in Administration and IT in Letterkenny IT.
Three years later, Una, now aged 22, has attained her degree, passing her exams in May, and will graduate in October.
Securing a place on a Community Employment Scheme (CES), Una is now working in Dungloe Hospital where she is dealing with queries from staff and the public and carrying out IT duties.
“I am enjoying the job. The work is going really well for me. The hospital is accessible for me as my office is on the ground floor and there are really good toilet facilities,” says Una.
“I am really happy with this work at the moment; the hospital is in Dungloe which is close to home in Burtonport. I work 10am to 2pm Monday to Thursday and 10am to 1.30pm on Fridays, so if I could get full-time hours I would be quite happy.
“I have also applied to the HSE for a position but I have not heard back from them yet. The HSE is currently recruiting nationwide.
“I understand that the Minister for Disabilities, Finian McGrath, TD has proposed that the percentage of people with disabilites placed in employment is to be raised from 3% to 6%. I do hope that commitment is carried through.
“I was always interested in secretarial work and because of that I was able to accept the limitations being a wheelchair user placed on career choices,” she continued.
“However, I would have found it much more frustrating.”
Una, the youngest in a family of three children, has two older brothers Patrick and Sean, is the daughter of Denis and Agnes Bonner. Her dad’s twin brother is former Irish international soccer legend Packie Bonner.
Her whole family is delighted that Una has secured a job she is enjoying and very proud of her academic achievement – her graduation day will be a great milestone celebration for all the Bonners.
Because of her positive experiences in college, Una says that she would advise anyone with a disability, who is hesitant of going on to third level education or fearful of a particular career choice, to just go for it.
“There is loads of help and support out there and I would advise people with disabilities to take advantage of them. You just have to avail of this help and make people aware that you need help and support.
“Letterkenny IT is a very good and accessible college – the lecture halls had steps down to the top of the hall but I just sat at the back and that was not a problem.
“The college has a disability officer, so I got loads of help and had no problems. The students were all very nice. There was a small group on my course, we all got on very well. All my classmates were very good to me, so I had no issues.
“I found people in college and throughout my schooling years very helpful and very willing to help. I had SNAs in school and in college I had a PA who was a fantastic help and support to me.”
Una’s college PA organised a taxi each day to bring her from home to college, took notes for her in class, and assisted her in getting from one lecture hall to the next one.
“The help is there if you just go for it.”
SBHI Board of Directors’ member John Henry has an impressive CV with more than 20 years’ experience in the construction industry and a Master’s degree in Quantity Surveying amongst his educational accomplishments.
Living with spina bifida, John, who is from Co. Mayo, has good mobility and describes himself as being very lucky health wise which has enabled him to work full-time throughout his professional career.
Working in the family business, T.H. (Contractors) Ltd. (building / civil engineering/ public works main contractor) in Castlebar since graduating from college in 1996, he says the fact that he is ambulant means that he has not experienced access restrictions.
“I have not come across any real access restrictions in terms of being able to work on site and in the office and there have been no restrictions and no discrimination from work colleagues in the profession over the years,” says John.
“Through the family construction business, I have had the opportunity for further education and work experience on different projects over the years.
“Achieving safety qualifications and a Master’s in Quantity Surveying helped me to assist in building the business.
“I have had very positive experiences in accessing employment and in continuing to work. However, my mobility is good and I possibly might have had a different experience if I was a wheelchair user.”
While John’s own experiences in NUIG and DIT Bolton Street were all good and positive, he believes that access to education for people with disabilities has improved significantly since his college years in the mid-1990s.
“There were disabled access officers in my time, however, the supports have improved since then and there has been a good improvement in the number of people with disabilities who go to college.
“Access to further education after Leaving Certificate for people with disabilities is good, however, the situation with people with disabilities gaining employment after completing their education is definitely still an issue.”
John believes that part of the problem with the low level of employment for people with disabilities is that employers are not sure of their needs and are afraid of what would be required in taking on a person with a disability.
“We need to encourage government departments to provide more funding to encourage employers to train and employ people with disabilities,” says John.
“We need state employers and multi-nationals to devise training programmes and have liaison officers to help place people with disabilities on work placement in different organisations to help and encourage both employer and employee.
“This would ensure that both employer and employee would have a good experience and it would lead to the person being kept on in the company.
“It would help to encourage employers to take on more people with a disability. If there was more liaising with government agencies and disability organisations to monitor the provision of adaptive grants etc., this would hopefully lead to more people with disabilities being in successful employment for longer.”
John is not only a high achiever professionally, as since childhood, he has been an active volunteer and participates in sporting and social pastimes.
“Through school I got involved in swimming which is my exercise of choice as I found I could do so without limitations. I was never involved in team sport as I would not have had the capability for football,” says John.
“I like keeping active, swimming helps my flexibility and using equipment such as cross trainer and rower keeps my limbs active. I also enjoy playing pool and snooker and recently beat former world snooker champion Steve Davis in a one frame pool challenge”.
When John was 16, he travelled to Lourdes with the Irish Pilgrimage Trust (IPT), the organisation which brings young people with disabilities to Lourdes each Easter.
“Having experiences as a young person of being away from home with other people with disabilities, carers and group leaders gave me the confidence to complete my education and get more confidence in myself to do the things I want to do in life.
“I really enjoyed it and continued to go to Lourdes every year for a number of years, first as carer and then as a group leader which mentally took me out of my comfort zone as I had to delegate tasks and try and pair the personalities of carers and young people with disabilities together correctly,” says John, who was also a Trustee on the Board of the IPT from 1998 to 2008.
“Lourdes and the Irish Pilgrimage Trust have a special place in my heart as I met my wife Caroline in Lourdes in 2002 whilst on pilgrimage”.
When John and Caroline moved to the Carracastle area a few years ago he began volunteering with the local Tidy Towns group and Pastoral Council as a means of staying active, getting to know people, and giving something back to the community.
And having ‘grown up’ with SBHI – his parents have been involved with SBHI’s Mayo/Leitrim/Roscommon Branch since 1981 – it was inevitable that John would become involved too. He was Chairman of the Mayo/Roscommon/Leitrim Branch from 2005 to 2015 and is currently Vice-Chairman of SBHI National Board of Directors.
“When I was about eight or nine my parents started bringing me to branch events like the Christmas party and I am still friends with a core group of five to eight members whom I have known since childhood.
“The branch was always really family based, we were all learning from each other and that same ethos is still there to the present day – there is something very special about the whole SBHI family.
“I really enjoyed my time as Chairman of the branch, learning from parents and young people and keeping up the friendships built up over the years,” he says.
“My Branch nominated me for the board of directors and I was elected a year-and-a-half ago. I am really enjoying being involved with Spina Bifida Hydrocephalus Ireland on a national level as it is good learning about all the issues in terms of funding and in continue securing improved access for people with disabilities.”
Access to brilliant healthcare helped Eddie Brett, who was born with spina bifida, defy the odds and reach the developmental milestones his parents Adrian and Lisa were told he never would.
“The doctors told me that Eddie would never be a ‘normal baby’; that he would not roll over, sit up, crawl, or stand up,” says Lisa.
He defied the odds on everything. Looking at the milestones of my other children Naima (10) and Evan (7) and comparing them with Eddie, he was only about two to three months behind them.
“He did everything, he rolled over, he sat up, he crawled, tried to stand up and I firmly believe it was down to the treatment he got from Enable Ireland in Naas, Co. Kildare. And the ongoing weekly treatment he is getting in First Steps, Patrick’s well Limerick.
“Eddie got the regular and brilliant treatment that he needed so young. Access to healthcare helped him defy the odds as it loosened his limbs and straightened his legs - without it I do not think we would be where we are today.”
However, when Eddie turned one, he was transferred into the public system in his home town of Monasterevin. Lisa says that everything went downhill because the physiotherapy staff were not given enough resources to give Eddie the regular physiotherapy he required.
Lisa has been driving Eddie to Limerick for private physio sessions for the past few years and she says that once again he is making great progress without first steps he wouldn't be where he is today.
“Eddie had surgery on his feet in January and can no longer use the Hip knee ankle foot orthosis (HKAFO) that he had. We are waiting on new ones so hopefully when he gets them he will be able to walk again.
“It has been a setback but we will battle on and we will get there.”
Eddie started in mainstream primary school in Monasterevin last month with Scoil Eimhin Naofa principal, Declan Costello ensuring that every effort was made to ensure the school building was fully accessible.
“Eddie absolutely loves school which took me by surprise as I thought he would be apprehensive but not a bother on him,” says Lisa.
“The school has been amazing. Declan Costello had ramps built over the summer so Eddie can access his class through the same entrance as the rest of his class mates. And he has a wonderful SNA in Clare Newman, who is actually a family friend.
“His teacher asked if anything needed to be adapted in class for Eddie and I told her that only if he is finding something difficult to make it a bit easier for him as he needs to be challenged.
“The school has been brilliant in terms of access and accommodating Eddie, leaving no stone unturned.”
Last month (Eddie not only started Stage School and loved every second of it unsurprisingly as he is a major showman), Eddie also followed in his big sister’s footsteps by joining the Leah Moran stage school in Newbridge.
“He was dead excited as he loves performing and I am expecting him to turn into a diva!
“Hopefully Eddie will do everything he wants to do. Nothing will hold him back, he is the most positive and determined little fella I know.
“I know he is only four but he has met every challenge and bowled it over and that is what I see going forward,” says Lisa.
“Adrian and I have never treated him any differently, even though he is in a wheelchair we have never molly coddled him and treated him the very same as his sister and brother.
“The world will never change for him, he has to change for it. The world is never going to change for anyone with a disability, they have to adapt and try to live in a world that is not okay for them.
“I know that Eddie will not be held back by any problems with access in his life, he has always been positive.
“If he needs help, we help him but he will try and try and try before he asks for help and we always let him try first before we ask if he needs help.
“There was a raised saddle on the door into his classroom which the principal was concerned about so we went down over the summer to see if it would be a problem.
“Eddie wheeled up the new ramp no problem, he did get stuck on the door saddle but he just did a wheelie right over it!
“He is so determined.”
For the past seven years Sinead and Chris Breen have tried to tackle all the challenges faced by their daughter Mikaela’s condition of spina bifida in a positive way.
Now they face the greatest challenge so far in deciding on surgery which will eliminate the health risks to Mikaela’s compromised kidneys but could reduce her mobility.
However, Sinead and Chris, from Lifford, Co. Donegal are determined to remain positive and make an informed and rational decision on surgery for their daughter to ensure she grows up as healthy, mobile and independent as possible.
Sinead explains that Mikaela, who will be eight next January, was born prematurely and it was initially thought that she had issues with her tail bone which would resolve when she put on weight.
“However, following an MRI, Mikaela was diagnosed with spina bifida. It was like being hit by a bus, we were not expecting to be told that but just had to deal with it,” she says.
“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.
“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 gets out of breath easily and becomes fatigued very suddenly with Sinead explaining that it is just like “flipping a switch”.
“We used to carry Mikaela in a buggy but by age seven, we were told that she really needed a wheelchair,” says Sinead.
“She adapted brilliantly, much better than we did. She is very resilient; we were horrified when we heard a wheelchair was needed but it has proved a Godsend to us all.
“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 has a tethered spinal cord - this occurs when the spinal cord is attached to tissue around the spine, most commonly at the base of the spine. As a result, the spinal cord can’t move freely within the spinal canal. This can cause the spinal cord to stretch out as the spine grows, leading to possible nerve damage, pain and other symptoms. In most cases, the condition becomes worse over time.
“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,” explains Sinead.
“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.”
While growing is presenting Mikaela with a lot of challenges – she is having a lot of falls and experiencing pins and needles in her legs, so she is using her chair more to contain the pain – she is very positive.
“Mikaela is such a happy perfect child. She is amazing, so loving and affectionate; a treasure. She is a tough cookie and very resilient,” says a proud Sinead.
“She hates catheterisation as she has mobility she feels it more than other people with spina bifida who may not have sensation.
“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.
“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.”