As SBHI Awareness Week 2018 draws to a close, we can look back on a great week of sharing information around the conditions of spina bifida and hydrocephalus and uplifting stories from 10 of our members.
They did so in the hope that the shared human experience of their lives will help to educate the public about the conditions and to show other members that they are not alone - that we are united, as one community, by spina bifida and hydrocephalus
We thank these members for generously agreeing to share their #mysbhilife stories of strength, courage, determination, and overcoming challenges.
The purpose of SBHI Awareness Week is to make people in wider society aware that there are thousands of people living with spina bifida and/or hydrocephalus in Ireland.
Why does society need to know and why does it matter?
‘It matters because when it comes to understanding the challenges our service users and members face, we need there to be an appreciation in the first place that around 40 babies a year are born with spina bifida, and 1 in 1000 live births are born with hydrocephalus,’ explains SBHI CEO Tom Scott.
‘It will be from here that we can successfully campaign on how we can work together to improve the services on offer and the standard of life available to everyone who knows these conditions to be a reality in their lives.’
During SBHI Awareness Week, we joined in the celebration of World Spina Bifida and Hydrocephalus Day (WSBHD) on Thursday, 25th October – a day also aimed at raising awareness and understanding about the conditions of spina bifida and hydrocephalus.
While SBHI Awareness Week 2018 is now drawing to a close, the sharing of our member stories, awareness raising, and campaigning for improved services will continue.
Taking your focus off feelings of nervousness and focusing on how good you will feel about yourself when you achieve your goals, is one of the tools 21-year-old Kayleigh Fisher used when working on her independence.
Being a participant on SBHI’s SHINE Summer Independence Week last year was a huge boost for Kayleigh in helping her learn to care for and look after herself.
“To anyone who is nervous, anxious or lacking the self-confidence to start looking after themselves, I would advise them to just apply to go on an Independence Week as it was such a huge help to me,” says Kayleigh.
“Keep your eye on the prize, focus on how good you are going to feel when you achieve your goals and not on being nervous.”
Kayleigh, who lives with spina bifida and hydrocephalus and resides in Bray, Co. Wicklow with her parents David and Fiona and younger brothers Zach (15) and Luke (11), said that building up her independence gave her a great confidence boost.
“Being on Independence Week when I was 20 was eye-opening to be honest. I had felt that I was not doing too badly but the week showed me areas which I could work on better,” says Kayleigh.
“One of my issues would be making my bed, I find it very difficult. I would always have cleaned my room myself, but Mum would make my bed. So, my goal was that I wanted to be able to make my bed myself.
“I have gotten a lot better at making my bed, however, I still find changing the duvet bit challenging!
Independence is not learned overnight and Kayleigh has been striving towards doing as much as possible for herself over the last number of years.
“My parents would always have encouraged me to be independent and because I am the oldest I just had to kind of do my own thing,” she says.
“I get up by myself every morning, I do my own toiletries and get dressed by myself. That gives me a great sense of independence, it is great not to have to depend on anyone else.”
Having completed her Leaving Certificate on St Kilian’s Community School in Bray, Kayleigh decided that she would like a job that would involve her working with people. She successfully completed two PLC courses in Bray Institute in social care and office administration and she has recently completed a computer course to improve her IT skills.
“At the moment my goal is to find a job. I had a job interview in the summer and it was tough, however, I was contacted recently to say that my interview was successful,” says Kayleigh.
“This has given me a great boost and I am now waiting for the job vacancy to come up. It is a job doing secretarial work and I am looking forward to starting it as I like human interaction.”
Kayleigh adds that it is because she has worked at building up her independence and her ability to look after her own care that she is now ‘not too bad at socialising with people’.
Edwina O’Leary has determinedly overcome the challenge of long periods of ill-health forcing her to leave further education courses on several occasions to enjoy a productive and fulfilling career while pursuing her BA hons in English Language and Literature.
The 44-year-old Waterford native lives with spina bifida and arrested hydrocephalus and lymphedema, a vascular condition where her legs swell up.
Edwina has been working in Waterford Institute of Technology (WIT) for the past 17 years. It is a job she loves, and she says that she would not wish to work anywhere else.
“I never had a problem working in WIT; the only part of the job which had to be set up for me was that my desk had to be altered at the beginning to accommodate my wheelchair,” says Edwina.
“No adaptations had to be made for me and the building I am now working in has accessible toilets, so I have been lucky enough.
“I have been given a stool to put my feet up on as I have developed lymphedema which is a vascular condition where my legs swell up.
“This leaves my legs swollen and heavy and sometimes it makes it hard for me to transfer from my wheelchair. I am having my legs wrapped every week in tight bandages which helps reduce the swelling.”
While her hydrocephalus arrested when she was six months of age and she did not require surgery to insert a shunt, Edwina admits that she would have traits of hydrocephalus.
“My organisational abilities and timekeeping can be slightly off as is my sense of direction,” she says.
“I am the worst person to give directions; when someone asks me over the phone for directions to WIT, I tell them that they would be much better off looking up Google Maps!”
Edwina attended St Paul’s Secondary School in Waterford and after completing her Leaving Certificate examinations, she commenced a secretarial course.
“I had an accident with a hot water bottle when I roasted myself after boiling hot water leaked onto my legs,” she recalls.
“I had to leave the secretarial course in the middle of it as I was up and down to hospital in Cork every week for three months for treatment and I ended up having skin grafts onto my thighs.
“I still had work experience to do from the course which I did in Waterford Crystal and when the work experience came to an end I stayed on there on a Community Employment Scheme (CES) for a year-and-a-half.”
When her time at Waterford Crystal came to an end, Edwina decided to go back to college and took on an Access Course in Journalism in Ballyfermot College in Dublin.
However, ill-health once again halted Edwina’s pursuit of life-long learning when she was hospitalised due to kidney failure. This resulted in her having surgery to remove one of her kidneys and she was ‘out of action’ for two years.
When fully recovered, she commenced another CES and began a work placement in Waterford Museum of Treasures (now called the Viking Triangle).
“At that time, around 2000, there were five archaeological excavation sites in Waterford. My job was to catalogue all the artefacts such as bits of pottery etc. which were excavated and input them into the National Museum of Ireland’s database.
“I did that work for about five months and I really enjoyed it as I love history. Then for another six months, I worked on reception taking calls and organising school tours etc.,” she says.
After this work placement, Edwina commenced another secretarial course which she did not finish either, however, this time it was not due to ill-health. Her work placement from this course was in WIT, that was 17 years ago, and she has remained there ever since.
“A friend of my mother’s helped me to get a six-week placement working on the switchboard in WIT. I had only finished that and was considering what college course to do next, when three years later I was asked to come back to fill in for someone who had a bad accident,” she explains.
“Still there a year-and-a-half later, I benefitted from the ruling where Grade 3 workers in a position for a year-and-a-half had to be made permanent employees.”
A good number of years ago, Edwina began job sharing, working one week one, one week off which suited her as she always wanted to achieve a third level degree.
“I took on an English Language and Literature Degree with the Open University which was mainly an online course, so it was great to have the time to both work and study.
“It took me eight years to pass my degree – which was too long but I got there in the end! Third time lucky as they say !”
“I was so proud to go to Belfast last October for my graduation with my parents, my aunt, and my best friend, Dr Caroline Goldsmith.”
A neuropsychologist working in mental health, Dr Goldsmith wished to change career to work with physical disabilities and began working as a PA. She became Edwina’s PA and they began firm friends.
“Caroline figured out how my brain works and what was the best way for me to study. She helped me put structure on my work and it was great to have her support and encouragement,” says Edwina.
Edwina believes that the support she has received from many quarters assisted her greatly in having the determination to overcome the challenges that her periods of ill-health and setbacks in completing education presented.
Obtaining her degree challenged Edwina to seek work where she could put her academic qualification to use and she applied for an administrative position in WIT’s School of Humanities.
“I got the administration position in the School of Languages, Tourism, and Hospitality working for the Director carrying out duties such as keeping track of his diary and taking minutes of meetings,” she says.
“I really enjoy the administrative work however, I am currently filling in on the switchboard again for someone who is on leave. I hope to get back to the School of Languages, Tourism and Hospitality shortly.”
Originally from Kilmeaden, Edwina is the daughter of Eileen and John O’Leary – he is the currently Deputy Mayor of Waterford. She has a younger brother who is married with three small children who keep her occupied (and broke!)
“I have always had great family support in everything I did. They were always there to help me but also to push me along and give me a kick to keep going when I needed it.”
Two years she got her own apartment, run by Cheshire Ireland in Waterford City.
“We have always been a fairly outgoing family so working with the public was not something I shied away from and in education you meet people from all walks of life all with all sorts of stories,” says Edwina
“I love the freedom of having my own place to live while having the support of someone to help me for a few hours a day in the evening or night time.
“This is ideal as I now work five mornings a week, I have time in the afternoon to do my own thing, either going to the library or to the cinema - my two passions.”
“Go for it, follow the career dream you are after,” encourages 47-year-old Frank Larkin who lives with spina bifida and is from Letterkenny in Donegal.
“I would never have dreamed I would be in front of groups of people delivering disability training but here I am, and I love it.
“My career guidance teacher in school, who was only able to see my wheelchair and my disability, said that I would be able to get a job at a desk working on a computer,” Frank recalls.
“That was the height of the career advice I received. At the time, I hated computers and I wanted nothing to do with a job like that.
“My advice to anyone is to have an idea in your head as to what you want to do, do not let anyone else push an idea on you, especially if you are not interested in it.
“Rather than settling for second best, go for what you want and don’t forget to look outside the box.”
For a couple of years after he completed his secondary education, Frank says that it was quite difficult for him to find his feet and it took him a while to find his first job.
He then got a job operating the base in a taxi company and he was there for more than 10 years.
“It was shift work and it was good to be working and it was good to have money coming in. It was steady work and everyday was different. As well as answering the phone and dealing with customers, I also dealt with the taxi drivers and the payments they had to make to the taxi company,” he says.
“My wife Pauline and I married in 2002 and while we were on honeymoon I expressed my feelings of how I had been unhappy in the job for a while.
“It was going nowhere, there was no progression. I wanted to do something completely different. Okay, it was a big risk to take as I had only just gotten married, but I decided to go to college at night time.
“I did a Frontline Management Diploma and I really enjoyed it. While working in the taxi company, I had done a couple of interviews for jobs in the disability sector. They were supervisory roles and I was always being told that the stumbling block was my lack of qualifications.
“In a couple of interviews, I came quite close to being successful but fell down on the qualifications. So, I decided to take on the course through the National College of Ireland at Letterkenny IT.
“It was brilliant, I really enjoyed it and it opened up a number of avenues for me. I was able to apply for jobs at a level I would never have dreamed of. I got a job in Buncrana as Development Officer with Cneasta, the Irish Council for training, development, and employment for persons with disabilities,” continues Frank.
This was initially a one-year contract and Frank had the brief of trying to source funding to keep the role going.
“That is where the difficulty lay. The job went well for the year, I got great feedback from the board, but I was just not able to source funding to continue on with the role.
Frank then undertook a course in the IWA on disability awareness training and since then he has always considered himself as a disability awareness trainer.
“I then got a great opportunity about four years ago to do a course through the Donegal Centre for Independent Living on Disability Studies. This was a Level 7 qualification through Maynooth University – my wife Pauline also holds this qualification.
“I am still doing disability training and I am now in the process of making it more structured and making it an actual business. I have someone working with me as a business partner who comes from a business and IT background,” he says.
“We have been looking for funding, but the stumbling block is that a lot of funding streams require matching funding.
“So, we are now in the process of just going ahead to start delivering training to get an income stream which will then allow us to come up with matching funding.
“We will be delivering training to people with disabilities, to people working in disability, and to companies wishing to improve their customer experience for people with disabilities.
“Businesses in the private sector who provide disability training to staff can get a grant of 90% of the cost up to €20,000 in the first year and up to 80% in every subsequent year from the Department of Social Protection,” he explains.
Frank has also undertaken a lot of voluntary work with Donegal Centre for Independent Living – he is currently delivering their Schools Awareness Programme to Transition Year students in Donegal – and with Spina Bifida Hydrocephalus Ireland both locally and nationally.
Frank accepts that working life can present challenges for a person with a disability, however, they can be overcome with a resilient and determined attitude.
“I would have had problems, not often thankfully, but there were periods where I was not well.
“Particularly in my early years after school I was in hospital a lot, that impacts on your ability to look for work and on your confidence – I did not know if I could hold any job down,” he admits.
“It can be difficult for a person with a disability and there will be problems with work, but you just have to keep pushing on and don’t give up.”
World Spina Bifida and Hydrocephalus Day was established and designated by the International Federation for Spina Bifida and Hydrocephalus’ (IF's) General Assembly in Guatemala 2011 with the aim of raising awareness and understanding about spina bifida and hydrocephalus. It serves also as means to advocate and promote the rights of persons with these conditions.
IF states that thanks to the continuous advances in medicine, healthcare services have significantly improved for people with spina bifida and hydrocephalus.
Unfortunately, IF points out that many children and adults living with spina bifida and hydrocephalus still do not have access to the right treatment and care services and stigma and discrimination remain a reality in many countries. Also, people are not aware of the conditions of spina bifida and hydrocephalus and ways to prevent neural tube defects.
The World Spina Bifida and Hydrocephalus Day was held for the first time, on 25th October 2012, at the European Parliament in Strasbourg. IF members from all over the world made this event, which was supported by the World Health Organisation (WHO) a great success.
The following year, 25th October 2013, IF celebrated the launch of the PUSH platform and met at the European Parliament in Brussels to discuss the importance of access to healthcare. This debate was continued by IF in 2014 and 2015 with campaigns and events all over the world.
In 2016 the International Federation for Spina Bifida and Hydrocephalus together with the Flemish Association for Spina Bifida and Hydrocephalus (VSH), Ghent University, and the Ghent University Hospital (UZ Gent) organised the 27th International Conference on Spina Bifida and Hydrocephalus, Turning Points.
One of the highlights of this event was the official launch by HRH Princess Astrid of Belgium of the Global Prevention Initiative.
Last year IF celebrated WSBHD by an action connected to the mental health of people with these conditions.
This year to celebrate the World Spina Bifida and Hydrocephalus Day on Thursday, 25th October 2018, IF collected testimonies from people living with these conditions.
This year’s topic is ‘Spina Bifida and Hydrocephalus throughout the lifespan’ and IF is sharing people’s stories from all regions of the world to share experiences, obstacles and good practices, from childhood to adulthood.
You are welcome to join in the conversation on World Spina Bifida Hydrocephalus Day by leaving a comment her, or join in and follow the conversation on social media @SBHIreland and @ifsbh
#wsbhd18 #mysbhilife #sbhiawarenessweek #spinabifida #hydrocephalus.
Nearly four years on from getting ‘a whole new lease of life’ following a kidney transplant, Paul Gantley is in the middle of recording a music album.
Paul was taught the violin, passing all eight grade examinations with honours, however, he went on to teach himself how to play the piano.
“I started messing about with a keyboard I had at home and went on to be completely self-taught on the piano,” says Paul.
“I have an unbelievable ear for music: if I hear a song on the radio, I can just go away and play it.”
Living with both spina bifida and hydrocephalus, Paul, aged 38 years, shares a home with his dad Mick, sister Mary, and his nephew Chris in Tullyallen, outside Drogheda, Co. Louth.
It was through Mary’s friend who works in Abbey Lane Studios in Drogheda that Paul got the opportunity to record his album.
“I think initially they were just doing a favour for Mary, however, now they are very impressed with my songs and are really interested in getting the album recorded,” says Paul.
“I am recording 10 original songs which I wrote. We have six recorded already, so I am hoping that the album will be completed early in 2019. My music is mainstream pop and rock with maybe a bit of country – Garth Brooks and Shania Twain influences – crossing into pop with influences of Billy Joel, Robbie Williams, and Elton John.”
Becoming a professional songwriter is Paul’s ambition rather than being a recording and performing artist as he feels that he would not be physically able to go on tour.
“I did a gig in the Helix with Don Baker a couple of years ago and I really enjoyed being able to perform on stage. Don was doing three gigs, I was only able to do one but even he admitted that three nights of back to back gigs is physically demanding,” he says.
“So, I would like to be the songwriter and leave it to other musicians to do the gigging singing my songs!”
A number of years ago, Paul appeared on Open House on RTE with Mary Kennedy and Marty Whelan and he performed ‘Without You’ which he wrote as a tribute to his mum Carmel, who died in 1996.
“My Mam is still sorely missed. Having spina bifida and hydrocephalus is tough, but you just get on with it; losing Mam was very tough – we were very close, she was always up for devilment and really was my partner in crime.”
A whole new audience has recently been able to enjoy hearing Paul’s tribute song to his mother as a video shot by SBHI CEO Tom Scott of Paul performing the song has gone viral on Facebook!
One person who saw the video is a friend whom Paul has not been in touch with for 20 years; they have now reconnected on Facebook and hope to meet up in Drogheda in the next few weeks.
Paul must have inherited some of his mother’s sense of ‘devilment’ as he has a wide circle of friends from all walks of life: he counts celebrity and television presenter Lorraine Keane as one such friend.
“Lorraine is a great friend, she recently paid for my day at the Bellewstown Races. She’s a lovely person and has been amazing to me, always checking up on me when I'm in hospital and she loves having the craic with me too,” says Paul.
“Titan, Bailey, and Crystal, my three huskie dogs really are my best pals, I'd be lost without them.”
Paul enjoys socialising very much and does not let the fact that he does not drive hold him back; he just gets taxis to whatever party he has been invited to. He is very outgoing – a cousin gave him the nickname of ‘Rambo’ 20 years ago and it stuck, so much so that sometimes he forgets his name is Paul and only answers to ‘Rambo’!
So, how does Paul manage to pack such a heavyweight punch into his social life? He says that it has a lot to do with confidence and self-belief.
“I was recently speaking with an SBHI volunteer about this subject of confidence and about what people who are lacking in self-confidence can do.
“I think that there is a need for people with spina bifida and/or hydrocephalus to be given more recognition for their talents – we have so many talented people from artists to authors in our community, it is unbelievable,” he says.
“Once you get a little bit of recognition and validation it helps your confidence to build up, then you can take on more and do more and there is the knock-on effect of the more you do, the more confident you become.
“However, I think that a common mistake that people make is that they feel it is their fault when they feel lost in a group. My answer to that is if you are in a group of people and you are finding it hard to fit in, it means that they are not nice people if they cannot even converse with you.
“They are the ones with the disability and it is called ignorance – you need to move on and find other nice people, just move on.
“While the situation is not as bad as it was in the past, unfortunately attitudes have still not changed completely, and a lot of people still see the wheelchair first and the person second.
“I did a gig in a pub once and they gave me a packet of Tayto thinking they were doing me the favour rather than ‘you have packed out our pub, let’s pay you’.
“It is all about equality and we still have to strive for it, we still have to show people that we are humans just like them – we just want to chat and engage with people and have the craic like anyone else.”
Paul worked in the retail end of the music industry for 17 years but gave up his job several years ago before he has his kidney transplant.
Describing his transplant as ‘brilliant’, Paul says that he confounded the surgical team by making a remarkable recovery and being discharged from hospital only 10 days after his surgery.
“I really was a new man after my transplant, it has given me a whole new lease of life. I can do so many things again and I have so much more energy,” he says.
“I am now also looking after myself much better, I drink a lot of water and I am staying on top of my bladder care and management.
“My ambition to become a professional songwriter is now realisable and I am really looking forward to completing and launching my first album!”
“I would encourage everyone like me who is living with spina bifida and/or hydrocephalus to get out and meet people and lead a full social life.”
This is the advice from Jennifer Barrett, a 31-year-old woman from Passage West in Co. Cork, who does not let the conditions of spina bifida and hydrocephalus hold her back from leading a busy and fulfilling life.
“Leading a busy social life is not just about socialising and having fun, but from a career point of view, you never know the contacts you will meet when you leave your home and get out.
“Networking is what it is all about. It is not just all social but about the work-life balance as well – that is very important.”
Jennifer, who lives at home with her parents Joe and Liz and her brother Robbie, admits that she really enjoys her social life.
“I have a good circle of friends and I would be lost without them as they are there for me in the good times as well as the bad. I can talk to them at any time and it means a lot to have their support.
“I enjoy going out with my friends for meals and drinks – just getting out, socialising and meeting people is what I am interested in,” she says.
For anyone who may feel intimidated about getting out and socialising, Jennifer says that a great way to start socialising is by joining a club in your local community group that you are interested in.
“For instance, how I started out was by getting involved in my local choir. That really helped to get me out and about.
“I am no longer involved in the choir, but I continue to be involved in the Cork Spina Bifida and Hydrocephalus Association, I also link in with Spina Bifida Hydrocephalus Ireland (SBHI), and I am currently Secretary of our residents’ association.
“The Cork Association is a great way of meeting likeminded people and hearing stories and experiences of other people with spina bifida and hydrocephalus.
“I have been away on trips with SBHI on their SHINE away breaks and I have really enjoyed them, and I would encourage other people to do the same.
“I also go to the Crann Centre in Ballincollig, Co. Cork which is for people with all spinal injuries. It is a great meeting point and they also ran a very interesting summer programme of classes.
“I have also undertaken some leisure courses that were provided to the spina bifida and hydrocephalus association and its members such as mindfulness – which I think everyone can benefit from – beauty courses, and reflexology to mention a few.
“It is very important for your wellbeing to be with other people.”
Jennifer is also interested in going to the gym as it is good for her physically and mentally.
“The gym I attend twice weekly is called BeFitness with Leone. It is a very inclusive gym and luckily it is only across the road from my house, so I can go there independently,” she says.
“I like being independent, however, being as independent as I am wouldn’t be possible without the love and support of my family – my parents, sister Karen, brothers Johnny and Robbie, and my boyfriend Michael.”
Jennifer says that part of the reason why she relies so heavily on her social life now is because she does not have a job. By getting out and meeting people, she is constantly networking to improve her employment opportunities as well as ensuring that she remains focused.
“I am plugging away at trying to find employment or voluntary work. Like anyone else, I want to work to make my life worthwhile, to give me a focus to get up and out each day, and to play a valuable role in society and contribute,” explains Jennifer.
She says that she was very fortunate to attend mainstream primary and secondary education and while there were some challenges along the way, such as changes in Special Needs Assistants looking after her, she overcame them all and passed her Junior and Leaving Certificate exams.
After school, Jennifer completed a two-year Travel & Tourism Course in St John’s Central College in Cork which she really enjoyed. While attending this course, she secured work experience in a Travel Agency.
“They said that there would be an opportunity for me to secure a job with them when I completed my course, but unfortunately the travel agents went wallop so the job did not happen.
“I then did an office-based work placement with the ESB in Cork and after that I went on to do a one-year course in Reception and Customer Sales in the College of Commerce in Cork. I really enjoyed this course also and I achieved a City & Guilds Certificate from it.”
Since then Jennifer has been trying to see if she can put all her educational experience into use by securing employment.
“Unfortunately, nothing has come up yet, however, I am hopeful and determined.
“I don’t think it is intentional, however, I do feel that the fact I am a wheelchair user is a barrier to employment,” says Jennifer.
“I do not think employers realise that people in wheelchairs are as capable as people who are able-bodied.
“It is not out of malice or badness, it is just the way society is, but it is wrong. I just continue to work through it and do the best I can with job applications – I will never give up!”
At school and in college, Sarah Cregg, who lives with spina bifida and hydrocephalus, was constantly battling to overcome the challenges posed by memory retention issues.
Retaining the information learned in class in primary and secondary school and what she studied in three third level business courses was difficult for Sarah. However, she persisted and did not give up.
Now, aged 21 with a full driving licence under her belt, three successfully completed business courses to her name, two All-Star Awards for Wheelchair Hurling, and a new job which she is thoroughly enjoying, Sarah can look back with pride on her achievements.
“I do now definitely feel a sense of achievement and I know all that I have done for myself, but I did not appreciate it at the time,” says Sarah.
“Looking back now I can see how far I have come, and I know that I have done it.”
Sarah, who is from Frenchpark in Roscommon attended St Patrick’s National School in Frenchpark and St Nathy’s Secondary School in Ballaghaderreen. After completing her Leaving Certificate, she undertook a PLC course in Business Studies in Castlerea and the following year, she did a Business Course in Sligo IT.
Sarah then completed a hat trick of studies by successfully completing another PLC course in Business Studies in Sligo.
“There were challenges right throughout primary and secondary school and into my college courses,” admits Sarah.
“Remembering what had been taught in school was always hard for me. I had difficulties with tests and exams and if you asked me a question about something I had learned last week, I would have trouble remembering.
“That was my experience, it was very difficult, but I did it.”
Sarah has passed her driving test and now has the great freedom and independence of being ‘able to go where I want without having to wait for lifts’ as she drives herself around in her Ford Focus.
And now she drives herself to Strokestown every day to her new job in administration with a company called Oncor Ventures.
“It was as a direct result of all the courses I did that I was successful in getting this job. One of the businesses within the company is the Strokestown Democrat newspaper and I work for that selling advertising.
“I am enjoying it so much and I really like meeting and speaking to new people every day. I work 21 hours a week, the job is for one year, but I hope I will be kept on.”
Sarah, a young woman with career ambition looks to the future when she gains more experience in the world of business which will allow her to progress to more senior roles with more responsibility.
Her advice to anyone living with spina bifida and/or hydrocephalus who would like to follow in her path is to think carefully before rushing into third level education just for the sake of it.
“You need to decide exactly what it is you want to do, make the right choice of course for yourself and do not have anyone telling you what you should do,” urges Sarah.
“Then when you see a course that you would like, just go for it.”
Sarah lives in a ‘GAA mad’ family with her parents P.J. and Annette. She has three brothers Cathal, Finbarr, and Darragh and a sister Niamh. It is because Cathal and Finbarr play on the Roscommon Football team that the whole family is heavily involved with the GAA.
About five years ago, Sarah was approached to ask if she would be interested in joining a Wheelchair Hurling team which was being set up in Roscommon.
“I did one or two training sessions to see if I would like it and I did, and I have been on the team ever since. I am the only girl on the team but that is actually great, and I am accepted as just one of the team by the rest of the lads.”
For two successive years – 2016 and 2017 – Sarah was deemed to be the best player, winning All-Star Awards.
“I was never expecting to get awards, so winning two All-Star awards was brilliant and extra special.”
In June, Sarah had the privilege and pleasure of being selected as one of a few GAA players to meet Prince Harry and his wife, Meghan Markle in Croke Park during their visit to Ireland.
“It was absolutely amazing. It did not hit me until I was up there right beside them that I was actually meeting them!” she says.
“It was really good to speak with Prince Harry and Meghan, they were very genuine and lovely and very easy to chat to.
“I told them that I play on a Wheelchair Hurling team and when Meghan heard that I am the only girl on the team she said: ‘good for you’!”
Going back to college as a mature student and choosing a course he was interested in was the best decision for Shane McDonagh.
Following some negative experiences in secondary school which saw him struggling with his confidence, Shane did not immediately pursue third level education after completing his Leaving Certificate.
Now aged 34, Shane lives with his parents Fiach and Ann, his sister Niamh, and nephew Luke (8) in Camolin, Co. Wexford.
“I suppose I was a bit fed up with education. I enjoyed primary school, but I found secondary school a bit difficult,” recalls Shane who lives with spina bifida, hydrocephalus, and scoliosis.
“I found it hard to adjust and I suppose I always felt a bit different from the other kids. My scoliosis was starting to take hold and I was beginning to look a lot different than everyone else.
“I did try to make the most of it and I tried to do my best, but it dented my confidence quite a bit. And I was not the best student as my mind was always distracted with other things.”
Looking back now, Shane says that secondary school was not all negative for him and his advice to anyone having difficulty fitting into school is to try and ignore the negativity and ‘stay positive and strong’.
“You will get there, and it will be grand in the end. As long as you have the support of family and friends, it will work out for you in the end,” he says.
A couple of years after leaving secondary school, Shane decided to do a course in administration which he enjoyed, however, unfortunately it did not lead to any employment.
He then took on a more advanced course in office and financial administration in Enniscorthy in 2007 and this led to him securing a very successful job with a private training company, also in Enniscorthy.
“I stayed with them for four years until the recession hit and the company was forced to downsize. It was a very good job to have in hindsight, I suppose I did not really appreciate it at the time and it was a lovely company to work for,” says Shane.
“I spent another couple of years unemployed and I then decided I would have to get myself back into the workforce and try to find another job. I got a job with a private medical practitioner but it only lasted six months.”
Shane then decided that it was time for something new in his life and decided that going back to college would be the best thing to do. And unlike when he left secondary school, he realised that furthering his education to get a good job was not just a case of choosing a third level course, he had to pick the right course.
“I realised that college is not just a case of picking any course, you have to pick the right path for yourself to take. If it is right for you, then that is the main thing,” he says.
“I wanted to do something in media studies and I found a course in media studies in Ormond College in Kilkenny with a number of modules, including radio production which I was really interested in.
“Unfortunately, again I struggled with my confidence and ability to stay focused, however, I was delighted with the radio production module and I passed it with flying colours, earning a distinction.”
Having completed the course, Shane struggled to find a job. He did eventually secure employment with a company in Enniscorthy, however, this job only lasted three months.
“Unfortunately, I have gone through long periods of unemployment and recently I was finding it difficult to be confident and stay motivated.
“However, I am really now trying to get back into the swing of things and I am trying to stay as positive as I can – at times that is easier said than done.
“I have a plan now which I am working towards. I would like to move back to Kilkenny. I am on a waiting list with Employability in Kilkenny to try and help me get a job which would allow me to move there and rent accommodation.
“I have some contacts in the community radio station in Kilkenny who hopefully will be able to help me get work experience and once I have some experience I would hope to be able to pursue a career in radio.”
To help Shane keep himself ‘sharp and get back into my rhythm’, he has recently joined an exercise programme in his local gym.
“I was in a slump, I was sitting around doing nothing for too long. Half the battle was recognising this and now I am doing something about it. My sister-in-law mentioned this gym programme to me and I jumped at the chance.
“The six-month programme helps with your mental as well as physical wellbeing. I attend a weekly group exercise class and then we do exercise ‘homework’ for the rest of the week.
“The homework may be a gym class or just going for a walk – something to get you out and about, improving your health and getting fit.”
Despite his struggles to gain employment and his occasional crises of confidence, Shane considers himself to be a very positive and lucky person.
“I am totally ambulant, I have never needed to use a wheelchair. And I have a family who is always there for me,” he says.
“They are a great support to me and I am very thankful for that support network during the times when I am struggling with my confidence and motivation – I am very lucky.”
Being parents to a child with a disability is not all ‘doom and gloom’, yes there are challenges to overcome and some days are tough, however, there is so much positivity and hope.
This is the message Darren and Linda Lowry from Castlebridge, Co. Wexford whose five-year-old son Jack lives with spina bifida wish to relay to other parents.
“We worried so much about Jack when he was a baby. We worried about him developing hydrocephalus and we worried about his spina bifida,” says Linda.
“I worried so much for the first few years. Now, when I look at him walking into school with his friends, I wish I had not worried as much. I wish someone had told us at the start that spina bifida is a snowflake condition and no two children are the same.”
When Linda was seven months pregnant with Jack, she and Darren were told that their baby would be born with spina bifida.
“To be honest, it was devastating, Wexford Hospital did not know how to explain it properly. They said he would be paralysed, there was no other outlook; they did not know much about the condition,” recalls Linda.
“They did a scan and sent us out to the waiting area where all the other happy parents were. We were so upset we could not stay there and so we waited in our car for an hour-and-a-half.
“We went back into the hospital and the doctor did not have a clue, he just said that Holles Street Hospital would tell us more.
“We were hoping that they were wrong, but they were not. Jack was born with myelomeningocele spina bifida, but he had no fluid on his brain, so he did not have hydrocephalus.”
When Linda went into labour, her temperature spiked, and she had to have an emergency caesarean. She only got to see Jack literally for seconds after he was born. They had to be kept apart as they both had open wounds.
Two days after being born, Jack was transferred to Temple Street Hospital for his lesion surgery. Linda was still in hospital in Holles Street, so Darren was running forward and backwards between both hospitals.
“My sister Lisa bought Darren a video recorder as she thought his would be a good idea, so Darren took loads of recordings of Jack and I was able to see those at least.
“Jack’s surgery was successful, however, when we brought him home, we were watching his head all the time in case it turned out that he also had hydrocephalus,” says Linda.
“I was imagining it was getting bigger. I measured his head at least 100 times a day.”
Darren added that they continued to check and measure Jack’s head for four years and only stopped last year.
“Jack’s eyes were sore and swollen and when we brought him to the doctor, we got a fright as she thought he had hydrocephalus,” explains Darren.
“We brought him up to Temple Street but the doctors there did tests and assured us that Jack does not have hydrocephalus.
“Jack goes swimming and it was just a case of too much chlorine in the pool. The chlorine went into his eye and resulted in his optic nerve swelling.”
Linda admits that the first couple of years of Jack’s life were tough as they monitored his kidneys and bowels constantly to make sure they were working properly.
Like any parents, Darren and Linda were overjoyed to see Jack reaching the milestone of taking his first steps.
“Linda rang me one day while I was at work, she was shouting, and I thought something terrible was wrong. We have a long kitchen counter and Jack was walking the length of it – we were ecstatic,” he says.
“Seeing Jack take his first steps gave us great hope. We were not being greedy, we knew that he would have to use aids and braces. It was just great to see him walking,” adds Linda.
“His mobility continues to be okay, he needed AFOs at the start for the first couple of years, but the physio took them off him as he wanted to see Jack develop muscle strength without them.
“He will always have a weaker calf on his right side – his right foot affected by the lesion - but is does not stop him. At the last hospital appointment, they told us to keep on doing what we are doing.”
Darren says that Jack is a very determined boy and relishes in attempting to master things when he is told he will not be able to do them.
“He was top of the class in taekwondo one week which made him so happy and he is getting so much stronger on his feet because of it. His balance is good, he is not falling anymore as he used to trip over his own feet,” says the proud father.
“We received a lot of hope about his mobility at the last hospital appointment, so again I will say that it is not all doom and gloom,” continues Linda.
“You can’t help worrying about the future: will he start losing his mobility, will he develop a tethered cord?
“The doctors have told us to try and think ‘what will be will be’ because they cannot say easily if his mobility will drop to the floor.”
“I think when he comes to the age of 11 or 12 when he understands about exercise it will push him to get stronger and that should help to keep his mobility up,” says Darren.
“Some days we have to force him to exercise but when he is older he will do it for himself. He will just have to keep up his mobility.”
Linda and Darren do physiotherapy with Jack everyday and encourage him to play his sports as they feel if they just let him sit around doing nothing, it will adversely affect his mobility.
“He is so determined and confident,” says Darren. “I brought him to Laois where I am originally from and took him to one of my brother’s hurling training sessions. I had to physically hold Jack back as he wanted to get into the middle of the players out on the pitch!”
Jack is attending a mainstream primary school; he is doing so well there and is being supported so well by the staff that Linda says she now knows this was the best decision to make.
“He is doing so well at school and he loves it there. His kidneys and his bowel look good now, and there are no issues with his head,” she says.
“While we do not know what will happen in the future, we are so much more hopeful now than we were.
“Jack makes us happy seeing him enjoying life to the full every day and doing everything that any other five-year-old would do. Nothing stops him, he is a very loving and confident little boy.”