Mary DeCourcy laughs as she recalls a school sports day many years ago in Scoil Mhuire Gan Smal, Letterkenny, Co. Donegal. It was 1967 and she was 11. She had put her name down for every event and things weren’t going too well in the winning stakes!
The weakness on her right side and the weight of the caliper she wore to help her to walk caused her to trip and fall down quite a lot. Sr. Bernardine, the Head Nun intervened. The last race of the day was spud and ruler (same as egg and spoon) and Sr Bernardine decided to give Mary a small advantage. She cut the potato in half and glued it to the wide plastic ruler.
“I’ll murder you if you tell anyone,” Sr. Bernardine threatened with a smile. Mary didn’t win that race either because, she tripped on a sod on the field and fell. She was laughing so much she could not wrestle the heavy caliper and herself upright.
As a child, Mary spent long periods of time in hospital, and as a result her education suffered. Her father understood the importance of education and got the books she should have been studying in those early years. He set her work to do every day before he went out to work. She was seven years of age before going to primary school for the first time. Her father had done such a good job she moved up four classes in two days.
She always believed that she had polio, and, it was only following a long search for her medical records, finally released to her under a Freedom of Information request five years ago, that she found out she has Spina Bifida. Tests to rule out Polio were inconclusive so it is possible that she contracted Polio as a child.
“I had been trying to get my medical records for years. In 1977, I had my first hip replacement surgery, and the surgeon, who tried to get my records, was told they were lost or destroyed,” says Mary.
“However, he told me that they were probably not lost or destroyed because it was frowned upon at the at that time to get a second medical opinion.
“To get my medical records under the Freedom of Information was a long process. I cried reading them, not because of the Spina Bifida diagnosis, but because of sets of photos in the records which were taken when I was six and 10 years of age.
“I remember vividly those photos being taken as I was naked and embarrassed. They brought me back to the mind of the lonely vulnerable child I was then,” she recalls.
Mary was hospitalised for the first time at 18 months and remained in hospital until she was three years of age. In Fact, she spent most of the first ten years of her life in hospital. She required a lot of surgery as both her hips were dislocated and circulation and muscle damage had to be repaired. It was different times then. Parents could only visit occasionally and children under 16 were not allowed to visit the hospital.
Despite her many surgeries and diagnosed childhood arthritis, Mary has the ability to live her life without her ‘disability’ being a ruling factor. When she was 10 years of age, her mother, Bridie McKendrick died suddenly and Mary, who had been living in Co. Wicklow with her parents and four brothers and one sister, was sent to Letterkenny, Co. Donegal to live with her mother’s family.
“When I was growing up in Donegal, the only disabled person I knew, apart from myself, was an uncle who was deaf and dumb. But I never thought that he had a disability, I just learned sign language to communicate with him,” she says.
When Mary completed her secondary education, she returned to Wicklow town in 1974 and has lived there ever since. She got a job with Wicklow County Council where she had a very enjoyable career.
“When I finished school and started looking for a job, I found it frustrating and humiliating as many interviewees would not give me a chance because of my disability, even though I had a very good Leaving Certificate and a very good secretarial qualification,” recalls Mary.
“This was before the Equality legislation and I am delighted that things have improved greatly since 1974 when I started looking for a job.
“We now have legislation which prevents discrimination on disability grounds - and all the other grounds of discrimination - which gives people looking for a job an even playing field legally.”
Mary married and had three children: Ray (33); sadly her second son, Shane, was stillborn, and Nicky (29). Mary has two grandchildren, Lisa and Sophie who live with Nicky and his wife Miriam in Austria.
“The proudest moments in my entire life were the births of my children and now my beautiful granddaughters,” she says.
“When my marriage ended I met a wonderful psychotherapist, Jacquie, who with her skill and patience helped me make sense of many challenges in my life. She used crystals and balanced my energy.
“I was fascinated with how I felt, so I studied hard and became a qualified practitioner and I now use Crystals, Colour Therapy, Emotional Freedom Technique and Laughter Yoga to help people.”
She took early retirement from her role as IT Systems Developer Analyst with Wicklow County Council a number of years ago to do this work.
Mary has travelled widely around Europe, Australia and India by herself: by taking the same sensible precautions as any lone tourist and with some careful planning, she says that travelling with a disability is not just possible but enjoyable.
“One of the big threats to my independence for a lot of years was that I drank too much alcohol. I did not realise, because I was having so much fun, that I was putting myself in harm’s way because of my mobility problem,” she says candidly.
“Now I do not drink alcohol while I am travelling as there is no point in putting yourself in harm’s way and I plan my trips to ensure I have assistance at airports etc.
“All the other precautions I take are the same for any woman travelling alone.”
Mary describes herself as a ‘serial volunteer’, working with many groups as a fundraiser. She is proud of having received the Bronze award from the Royal National Lifeboat Institution (RNLI) for her many years as a volunteer fundraiser. So, becoming Chairperson of the Wicklow Branch of Spina Bifida Hydrocephalus Ireland (SBHI) recently was a natural progression for this ‘serial volunteer’.
She has also shared her life experiences with SBHI members as a volunteer advocate. Because of her upbeat ‘can do’ attitude to life, Mary was recently contacted by the Disability Federation of Ireland (DFI) to assist in carrying out self-advocacy courses with young people.
So what advice would Mary give to younger people?
“You are a complete person regardless if a part of your body does not work like other people’s. You have gifts that make up for the weaknesses in whatever part of your body - it is only your body that is weak.
“Whatever you want to do, just give it a go and live your life as best you can. Be kind, loyal and compassionate with others.
“If you need help coming to terms with your disability, do not be shy, ask for help from your peers, family, and close friends,” she says.
“Do not be ashamed of your disability - we are all here for a reason, you have many talents and you are loved.”
There has ever only been one person with a “major hang up” about Michael Rice’s disability and that is himself.
31-year-old Michael, who has Spina Bifida, explains that in his experience, people have always perceived him first and his disability is almost an afterthought.
He has been his own harshest critic as he has spent a lot of his life comparing himself to a standard that he was never going to be able to meet.
“I would keep asking: ‘why can I not kick a football around like my younger brothers, Enda and Simon, and my friends?’ and ‘why can I not do all the things that other children my age are doing?’
“I suppose my hang up was all about the baggage with Spina Bifida and having to deal with that. No one else made an issue of it, it was just something that I found difficult to deal with,” says Michael.
However, a one-week course undertaken during the summer has made Michael realise that he has the inner resources and the impetus to make positive change in his life.
“I went on Spina Bifida Hydrocephalus Ireland’s first ever Independence Week at SHINE and it was absolutely fantastic,” says Michael.
“It was absolutely one of the best things I could ever do because it gave me a better understanding of my Spina Bifida.
“I have always been very routine orientated as routine helps me cope with things. But I was always very hard on myself for being like that, I was pretty much my own worst critic.
“But now I am learning to lighten up on myself – this is something I am still working on. To be honest, I would say that I will always have to work on it but I am making progress.”
Michael, who lives in Carlingford, Co. Louth with his mother Rita, joined Louth County Council in 2005. This was his first fulltime employment and he has his late father, Michael to thank for noticing the County Council’s job advert for him while he was in the middle of a computer course.
He started his work with the County Council in the Motor Tax office; he moved to a couple of other departments and is currently enjoying his position in the accounts payable section of the Finance Department.
Michael’s disability has never been an issue at work; his colleagues have always seen beyond his wheelchair when he uses it and his caliper aids when he is walking.
“I am the one being very hard on myself if I forget to do something or make a mistake – I am the one who is more upset than anyone else.
“Since Independence Week, I am going a little bit easier on myself as I understand now. The big thing for me was that I was blaming myself by saying things like: ‘I am stupid’, ‘I am not god enough’,” continues Michael.
“During Independence Week it was a tremendous relief finding out that it is really not my fault and I should not be downbeat about it. It crossed my mind that if this was only explained to me years ago, it would have saved me a lot of hassle, but I will not dwell on the past, I will carry on forward.
“My work colleagues noticed a great change in me when I returned from the Independence Week.
“I felt the change myself but I was sure that no one else noticed it. It was little things: I began getting involved in conversations at work where in the past I had a habit of isolating myself and not getting involved in office banter as I did not have the confidence.”
Michael adds that a lot of things which previously did not make sense to him do now after Independence Week which has given him a tremendous sense of freedom.
“It was a relief to realise that I am doing okay; I am doing the best I can and my best is good enough.”
Following on from his own incredibly positive experience of the inaugural Independence Week, Michael’s advice to SBHI members who are given the opportunity is: ‘absolutely do it, it was the best thing I could ever have done! I got so much more from it than I expected as I now have a better understanding of me and my condition.”
Michael’s personal growth during the SHINE Independence Week did not go unnoticed and he was deemed to be the participant worthy of the Greatest Achievement award. The award was presented to Michael by Justin O’Neill, the son of the late Christy O’Neill.
“I was dumbfounded when I won the award. Justin told a story of his dad Christy helping a young boy during one of the summer projects to get up onto a step and back down,” says Michael.
“As I listened to the story, I thought that it sounded vaguely familiar and then I realised that the boy Christy was helping to teach how to go up and down steps was me.
“The fact that the award was presented by Justin and that he told that story made receiving the award all the more special.”
Looking to the future, Michael now intends to continue working on totally divesting himself of his ‘hang up’ over his disability; believing in his many abilities and moving towards further independence by learning how to drive and finding a home of his own.
Two years ago if anyone had told Anna Shinnors that she would successfully complete a Master’s Degree in Dramatherapy, she would have seriously doubted them, because the week she commenced her Masters’ programme at Maynooth University, she had a fall which resulted in a broken femur and a six-month absence from work while she recuperated.
However, while a fall may break bones, adversity does not seem to put even a dent in Anna’s determination! Despite this serious injury and set-back, she did not defer her college programme, choosing to soldier on and last month (September), she received the news that she has achieved a 2:1 result in her Masters. Anna, who attained her primary degree in Social Care in Blanchardstown IT in 2009, now has a graduation ceremony in November to look forward to when she will be conferred with her Master’s degree.
“I am delighted with my result, especially as I got off to such a rocky start and was not sure if I would be able to do it at all. I thought that I might have to defer the course after I broke my femur. But, even though we had only started, people on the course photocopied all the course notes for me and helped me to catch up,” says 30-year-old Anna.
“There was a lovely group of people on the course with me, we bonded very well and I have made some very good friends. I was also very fortunate as the new campus in Maynooth is completely accessible for wheelchair users so I didn’t have to face any additional mobility challenges.”
Anna, who works for St John of God as a key worker, supporting adults with mild intellectual disabilities, always wanted to pursue an academic path in the therapy area.
“I did speech and drama when I was younger with Margaret Kenny in Leixlip and I did a lot of my grades. I really enjoyed this. As I wanted to do something in the therapy area, drama therapy seemed like a natural choice,” she says.
The Masters in Dramatherapy involved Anna attending college every Friday and one Saturday a month, work placements, and a certain amount of accredited hours of group therapy. Anna carried out three placements as part of the Masters. The first of these was in a day centre for people who have intellectual disabilities. The second was in a secondary school and the third was in a day centre for people who have Alzheimer’s/Dementia. It was this last placement that Anna particularly enjoyed and feels she would like to pursue work in this area in the future.
“The work with clients with Alzheimer’s/Dementia primarily focuses on enabling the recall of past memories through the use of drama, music and sensory stimulation. Dramatherapy is generally carried out through group work which encourages communication, social interaction and the resolution of other difficult issues.” explains Anna.
“I would love to do drama therapy as a full-time job but I am realistic enough to know that this is a very long-term goal. I will gradually build up to it by working a couple of hours here and there. While people are probably more familiar with play therapy and art therapy, Dramatherapy is an area which is growing and will hopefully continue to grow in the future.”
The next challenge facing Anna is to put her energy into improving her driving skills as she is a “nervous driver”, in spite of having passed her driving test a few years ago.
“When you feel that you are never going to see light at the end of the tunnel, hold firm and keep trying.”
These are honest and wise words of advice which Sarah Duffy now has the right – earned the hard way through experience – to impart. Sarah’s resilience was severely tested this year when the job she loves to do came to an end in January, and, after many unsuccessful interview attempts, her mental health began to suffer.
While Sarah withdrew into herself and stopped socialising as much as she normally loves to, she never totally gave up on her ambition to carry on working as a childcare professional. Her decision to ‘hold firm’ and not to give up on herself, paid off when Sarah was offered a job as a childcare worker in a new pre-school in Tallaght in September.
Sarah, who celebrated her 30th birthday in August, had been very happily working in childcare for on Community Employment Schemes for four years until she was told by the Department of Social Protection that she had reached her cut off limit.
“The Community Centre in St Dominic’s in Tallaght were very good to me, supporting me with my childcare studies – I have Level 4 and Level 5 qualifications. They even tried to get me kept on but I was no longer eligible for CES,” explains Sarah, who has Spina Bifida and Hydrocephalus.
“I had to start getting my CV out there and applying for jobs bit it was very tough. I had a lot of job rejections and I think that, some of the time, people were seeing the wheelchair and not seeing me.
“I am a very determined person but I think I was getting to the stage where I wondered if I would have to look at other avenues.
“I had started my Level 6 training but for health reasons – I think the job search was putting me under enough pressure – I stopped it but I will start it again next year and thankfully Levels 4 and 5 were enough for my new job,” she says.
“I have settled in fairly well to my new job at Beststart Early Years Services in the Community Centre in Jobstown. I am thrilled, it is fantastic. I am working five days a week from 8.30am to 12.30pm which is absolutely perfect for me.
“We take kids from two-and-a-half years upwards as long as they are toilet trained. This is a brand new pre-school and we have a lovely mix of boys and girls. While they are only settling in, they really love being at playschool.
“At the moment, there is only myself and the manager working there but they have pre-schools in other areas. Beststart’s ethos is on of ‘equality and diversity’, so I knew that this is the job for me.”
Sarah says that she could not be happier than she is at the moment, now that she has a job she loves. But she is not the only one as her family – parents Tony and Helen, older sister Lisa, younger sister Claire and her three nephews: Anthony (10), Freddie (5) and Carl (2) are thrilled for her.
“I would not be here without my supportive family who have been great to me. And not only is it great to have gotten a job, it is a wonderful feeling to know that I got this job on merit alone.
“Over the years, people told me that I would never be able to do certain things. I think they just meant that it would be so much harder for me to overcome barriers. I did feel that if I did not get this interview, I might have to look at a different avenue of how to work with kids,” continues Sarah.
“It just takes time get to the end. Everyone reaches the stage where ask if you are ever going to see light at the end of the tunnel but you have to hold firm and keep trying.
“I had migraine after I lost my job in January and while I am still waiting on some tests to see if they were caused by my shunt, I do not think so. I think they were caused by stress and I have not had any migraine since I got my new job.
“I was not very sociable when I was not feeling myself during those months when I was searching for work, but I will definitely be more sociable now as I love going out.”
Cillian Dunne has a challenging yet exciting four years ahead of him as he sets his sights on qualifying for the 2020 Tokyo Paralympics and completing his degree in strength and conditioning coaching Limerick’s Institute of Technology Thurles campus.
19-year-old Cillian who hails from just outside Borrisokane in the Premier County of Tipperary, is a T54 wheelchair racer and his Paralympic ambitions are being spurred on by his triple medal haul from the IWAS U23 World Games 2016 in Prague this summer. He won two silver medals in the 200 and 400 metres; a bronze medal in the 100 metres and he came a very credible fourth and fifth in 800 and 1,500 metres respectively.
Prague was Cillian’s second World Games as a wheelchair racer. When he competed in Holland last year he came fourth in the 800 metres; fifth in the 100, 200 and 400 metres and ninth in the 1,500 metres.
“To improve on my performance so much in one year was incredible,” says Cillian.
“It is crazy, I still look at my medals and say that they are not mine, I did not win them! But I did work so hard for them, so the training was definitely worth it.”
In a normal week, Cillian’s training comprises two nights of basketball, two nights of track work and two nights in the gym. Once a month he trains with the GB Parallel Success team in Belfast and with the Irish track team in Leixlip. Despite this gruelling schedule, when it comes to a rest night, this athlete, still wants to go training.
“It’s a lot of work but I am doing it for so long, that six nights a week is a habit for me,” he says.
“I am going to do a lot more work with David Coen, my personal trainer at the gym in Borrisokane.”
While his eyes are firmly on the prize of the Paralympics in 2020, Cillian’s more immediate goal is to qualify for the European Seniors as he wants to get into “the big leagues”. He is realistic that he has a long way to go to make the qualifying times: he will have to reach 15.02 seconds for the 100m and his current PB is 16.82. However, he is determined that with time and a lot of training he will make it.
Last month, Cillian commenced a four-year degree course in strength and conditioning coaching in IT Thurles. He plans to commute to college from the home he shares in Borrisokane with his parents Larry and Majella and sister Saoirse (14) for the first year and hopefully get driving himself by second year.
While committed to his studies, his ambition for athletic success and the honour of representing his country, may mean that he might have to defer the final year of his degree as it will clash with Tokyo 2020. However, he says that this is a bridge which he will cross when he comes to it.
There is no doubt that he will manage to successfully keep his athletic and academic ambitions on track as Cillian’s mindset has always been one of seeing solutions, not problems.
“This is the way my parents raised me; just because I have Spina Bifida, I was not treated any differently,” says Cillian. “My parents always taught me that my wheelchair was not an excuse, they also taught me to work hard for what I wanted”.
There is a thrill seeker in Cillian, who was introduced to para athletics at five when his dad brought him to Morton Stadium in Santry for a para sport open day and he tried out the javelin, shotput and discus.
“From that day, I loved it. When I was 14 I competed in my first International World Junior Games in Dubai in 2011”.
“It was eight-and-a-half hours on a plane but it was worth it as I came fifth in shot put eight in the javelin and eighth in the discus. That was not bad for a 14-year-old competing at U16 level,” he recalls with pride.
“However, in 2012 I had major bowel surgery and I lost a lot of weight and I knew I was not going to be able to throw anymore as I just did not have the strength and weight to put the necessary force behind my throw.”
Instead of feeling sorry for himself that he could no longer pursue the sport he loved, Cillian pragmatically went off looking for a new sport. While he was playing basketball “just for fun”, it did not capture his imagination with sufficient inspiration to adopt it as his new competitive sport.
“I came across track racing and I went to an open day in Morton Stadium, and met up with current Irish record holder David Griffith who later became my mentor. I was shown how to use my racing wheelchair in a totally different way - instead of gripping the handrims you punch them using special gloves.”, says Cillian.
“After a couple of laps, I said ‘wow, I love this, I love the speed’. After six months, I really knew that this sport was for me. With the help of IWA Sport I was fitted for a new racing chair which is great because it was made specifically for me.
Cillian has been fortunate in remaining injury free to date but worries about ever developing a serious injury to his shoulders or back. This is why it’s important to work with a qualified coach like his personal trainer and to listen to advice from experienced racers.
With competition season 2016 now over, Cillian will rest for a few weeks before beginning his winter training programme.
Cillian’s goals are to try and qualify for the 2017 World Senior Championships in London and the World Junior Games which look like being held in the USA. Cillian describes this as being “savage” as it will be his first trip to America.
Apart from the excitement of competition and travelling to the States for the first time, America is home to one of Cillian’s role models, Aaron Fotheringham. Aaron, who has Spina Bifida, created the sport WCMX which is skateboarding in a wheelchair, and was also guest star at this year’s Paralympic Opening Ceremony in Rio. “He was the first person in the world to do a back flip in a wheelchair and I would love to try that one day.”
If you would like to follow Cillian’s progress, you can do so by liking his Facebook page, Cillian Dunne T54 Wheelchair Racer.
Raising awareness of Spina Bifida and Hydrocephalus is very important, both to educate the general public about the conditions and to help take the fear out of the initial diagnosis for new parents.
So believes Caroline Lafferty from Killybegs in Co. Donegal, who is mum to eight-year-old Jamie, who has Spina Bifida and Hydrocephalus. With her husband Stephen, they undertake as much awareness raising as possible in their area.
“Spina Bifida and Hydrocephalus are no longer unknown words in my area. Everyone knows that there is a boy (Jamie) who has Spina Bifida and it is not the end of the world as he is a happy wee man, living his own life,” says Caroline.
“It would have been nice to have known this when we found out that Jamie had Spina Bifida and Hydrocephalus, that while, yes, he will always have these conditions, he can get on with life.
“Raising awareness will also help to educate the public over the conditions. After we received Jamie’s diagnosis, people were saying to us: ‘I know someone who had that (Spina Bifida) and I think they passed away,” says Caroline.
“Then it would come to light that the person they were talking about had another condition altogether. People always spoke with good intentions but it was not helpful.”
Jamie attends Dunkineely National School near Killybegs where he is now in second class and is getting on very well. He has the assistance of an SNA and keeps his Crocodile Walker in school during the week to help him when he is playing in the yard – however, he rarely uses it at home.
When Caroline was 32 weeks pregnant, a scan in Letterkenny Hospital showed that something was wrong. However, medical staff there were unable to make a diagnosis and Caroline and Stephen were referred to Holles Street Hospital in Dublin.
“We had to wait four to five days for that appointment which was horrendous as we had no idea what was wrong at that point – I wondered was I going to have a baby at all.
“Holles Street confirmed that Jamie had Spina Bifida but they were more concerned about the Hydrocephalus at that point as they said it was quite severe. They said things like: ‘not enough brain matter’, intellectual and cognitive impairment,’” recalls Caroline.
“I did not know what to think; I could not even say the word Hydrocephalus at the time. It was all like mumbo jumbo.”
The plan agreed with Holles Street was for Caroline to go home to Donegal and to come back in four weeks’ time for another scan and then a delivery date would be decided.
“I went home and tried to stay off the internet! It was a scary time. Then I went into labour early and I had Jamie in Letterkenny Hospital.
“It was a really positive birthing experience. I had four weeks’ lead in time to it; I had been prepared to give birth to a baby with Spina Bifida and Hydrocephalus,” says Caroline.
“There was no sadness involved and it was a relief to finally meet this little person. In the clinic in Holles Street when we went for the scan to confirm the diagnosis, we thought we were in the ‘bad news scan’ clinic as everyone there had tissues and were upset.
“When they told us the diagnosis, it was very matter of fact and run of the mill. In Letterkenny Hospital, maybe because it was in the country, everyone was ready, prepared, and waiting for me when I went in to give birth.
“It was not run of the mill and it was a very positive experience for us.”
A few hours after Jamie was born, he was transported by ambulance to Our Lady’s Hospital for Sick Children in Crumlin with Stephen and his brother following by car. The following day, Jamie had surgery to have his back closed and Caroline was able to get to Dublin shortly after he came out of surgery.
“It was a rollercoaster, my head was all over the place but I can still remember the huge sense of relief and that the massive worry was no longer there,” she says.
“The huge concern over the Hydrocephalus was not there in Crumlin. I thought they should be moving quickly to put in a shunt but they said they would wait and see. Six days later, they sent us home to Donegal with no shunt and eight years later, Jamie still does not have a shunt.”
Caroline and Stephen always questioned the doctors if Jamie would ever walk but none would be drawn until one doctor said: ‘Oh, I won’t see you back here until he is up on his feet’.
Between the Spina Bifida and having Hydrocephalus, Jamie struggled with his balance and meeting his developmental milestones but he eventually reached them all.
“Jamie is very much his own man and his own character,” says Caroline.
“Maybe I have the same worries as any parent but I worry about him completing his education; I worry about the potential disappointments and his long term health issues and mobility.
“I worry about him developing scoliosis. The Hydrocephalus will never go away and I worry about him needing a shunt at some stage as he does get headaches.
“He appears quite well and he is quite well, but he is still affected by Spina Bifida and Hydrocephalus.”
The advice Caroline would give to parents who are about to have or have just given birth to a child with Spina Bifida and/or Hydrocephalus is that it is not necessarily something to be afraid of.
“We were very much afraid for a long time. I think that Jamie was two-and-a-half before I dropped the absolute dread sitting on my chest about what would happen next,” she says.
“Yes, there are a lot of appointments, checking and monitoring, and everything has to be planned, and you have to be very organised – you cannot do things spontaneously. But it is not something to be afraid of.”
The strength you gain to deal with your child’s condition comes, says Caroline, not from your doctors, family or friends but from other parents of children with Spina Bifida and/or Hydrocephalus.
“The strength comes from people who have been where you are. A lot of people want to be helpful and be there for you, but unless they have your perspective, it is not the same,” she says.
“I would advise parents who have a child with one or both of the conditions to reach out to others in a similar situation for support and strength.”
Just like any other five-and-half-year-old boy, Luca Keogh is chatty, inquisitive, and full of playful fun. However, unlike most other young children, he possesses all these positive attributes, despite undergoing 15 brain surgeries and 23 general anaesthetics in his short life.
Luca, from Newtownmountkennedy in Co. Wicklow, has Spina Bifida and Hydrocephalus. His parents, David and Sarah were told that their son would never sit up on his own or walk, yet, he has defied these predictions and done both.
“Luca copes really well, he loves being in Temple Street Hospital and bounces back really well from surgery,” says Sarah.
“He has spent nearly 100 nights in Temple Street, he knows all the staff, there and he has his buddies. He loves the play room: he gets very excited to go to Temple Street, it is just normal to him.
“But he does not like the ‘smelly gas’ (general anaesthetic). He was the first child in Ireland to have the surgery he underwent in February. All these surgeries are not fun but Luca takes it in his stride, he is a very upbeat child.”
Sarah is Youth Officer with the Wicklow Branch of SBHI, where she is an active member involved in all of the plans and activities of the group.
Three years ago, Sarah started to bring Luca to Co. Limerick for intensive physiotherapy. While it is difficult to be away from home for three weeks at a time, four times a year, Sarah says that it is made easier by due to the progress Luca has made, the fact that she home schools her eight-year-old daughter Freya, and that they generally travel to Limerick with friends from SBHI.
“The therapy is the kind of programme which is in use in the USA and Poland, doing things such as sit ups, press ups and weights,” explains Sarah.
“The physio itself is not expensive but when it is two hours per day for three weeks and your accommodation as well, it does add up. But, there are so many benefits from it, it is well worth it.
“Luca could not sit up on his own – he had no muscle - but after three weeks of physio, at two years of age, he was sitting on his own.
“It was amazing. He went from lying to sitting in three weeks. Luca built up muscle and once he realised he could move that was the end of that! He was crawling, then walking and he was told he would never do any of those things.”
In the summer of 2015, Sarah says that Luca was walking very well, however, due to having had six brain surgeries in the course of one year, he is mainly using his wheelchair at the moment.
As he has Slit Ventricle Syndrome, Luca has a lot of issues with his shunts. The shunts underdrain at night, causing pressure spikes and disturbed sleep, leaving Luca very tired during the day.
“No one in Ireland has had a Miethke Valve – a programmable shunt – yet. But that is what I would like for Luca as it would allow pressure settings to be changed without the need for surgery,” says Sarah.
“Luca’s next surgery will be his 24th and I really do not want any more surgeries after that.”
Sarah is fulsome in her praise of the helpful supports she receives from other parents, the Wicklow Branch, and from SBHI.
“There is a really active parents’ group on Facebook. It is like a lovely community of help and support with things like hospital visits and any questions you might have,” she says.
“SBHI has been good to us and Luca: the Wicklow Branch has summer and Christmas parties and the SBHI conferences are also really good.”
When first time expectant mother Amanda Reeves received the diagnosis at 20 weeks pregnant that her baby girl, Alyssa, would have Spina Bifida and Hydrocephalus, she cried her eyes out for days.
It felt, naturally, like a shock, particularly as Amanda and her husband Keith had been trying to become parents for four years. In fact, the wonderful news that she was pregnant, came just two weeks before they were due to go ahead with IVF treatment.
“Due to a thyroid problem, I was at a high risk of miscarriage but I was delighted that all was going well, that is until we received the diagnosis of Spina Bifida and Hydrocephalus,” says Amanda, who lives in Clane, Co. Kildare.
“I had done everything right. I had followed all the medical advice. I was even taking Folic acid for the four years I was trying to get pregnant - I really hate it when people ask me was I not taking folic acid.”
Once the shock of the Spina Bifida and Hydrocephalus diagnosis wore off, Amanda stopped crying and her strong coping skills kicked in. As she had no idea about both conditions, she began researching Spina Bifida and Hydrocephalus and discovered Spina Bifida Hydrocephalus Ireland (SBHI).
“I really believe that knowledge is power. There are a lot of big medical words used and when the doctors say them, if you do not know them, they throw you. When you understand the words, it is not as scary,” says Amanda.
“I tried to find out as much as I could; I got in touch with SBHI’s Family Support Team and I joined the Parents’ group on Facebook and got great support from them,” says Amanda.
“I was scanned every month, I met the neurosurgeon in Temple Street to have an idea of what to expect, so I think I prepared myself.
“Having the diagnosis beforehand was very good as it allowed me time. Some parents of Spina Bifida and/or Hydrocephalus babies who only find out after the birth, find it a little bit harder.
“I was able to plan and prepare for my maternity and I knew exactly what would happen. I found out everything about EVD, the lesion, how long Alyssa would be in hospital, catheterisation, etc.
“I had myself mentally prepared. Everyone was expecting me to breakdown and be a mess but it was what I expected, so I was okay with it,” she says.
“I knew Alyssa was going to be taken away from me to have surgery and the staff in the Rotunda were just brilliant; they sent a nurse in a taxi with me to Temple Street and I had a half hour visit with Alyssa before she went in for her surgery.
“They came with me by taxi the next day as well and by day three, they said I was well enough to take the taxi to Temple Street by myself.
“I think it is all harder on the Dads when the child is born. I was in the Rotunda just after an emergency section and Alyssa was in Temple Street. So, who did Keith go to? He was over and back between the two hospitals and he had loads of paperwork to do. It was really very stressful and I do not know how he did it.
“My mum, Divina - who lives around the corner from me - and sister, Jennifer have been a huge support, I would be lost without them, they have been hands on, learning about the shunt, and catheterisation. I had great supports from the beginning from the Facebook page, SBHI, and the Kildare branch.”
Alyssa arrived 10 days early, eight-and-a-half months ago, by emergency caesarean section in the Rotunda Hospital. She was born at 5.30pm and by 8.30pm she was in Temple Street Hospital and she had her spinal closure surgery carried out the following day.
“She had an EVD measuring the fluid on her brain but we were sent home without shunt surgery. A week later we were back in hospital as her wound opened and she had to be re-stitched,” says Amanda.
“At eight weeks, Alyssa had to have shunt surgery as her head had grown massively and she was having seizures. She has been doing great since the shunt surgery.
“I bring her swimming twice a week, to Waterbabies and the Enable pool in Naas.
At the start she was not moving her legs in the water, but she is now starting to move her legs and feet. The doctors reckon she will walk but they never really know.”
Like all parents, Amanda worries about her child’s future and she knows that Alyssa’s conditions will bring problems.
“I do worry about things like will she walk? Then if she walks, will she break bones? Will she be bullied? The shunt is another worry because at any point it could go,” she says.
However, Amanda’s positive outlook means she is envisioning a future for Alyssa where she has no serious health problems and she attends a mainstream school.
Does the Reeves story resonate with you? What has your experience taught you? Feel free to add your story here as part of Awareness Week
The aim of World Spina Bifida and Hydrocephalus Day (Tuesday, 25th October 2016) is to raise awareness and understanding, and to advocate and promote the rights of persons with these conditions.
SBHI is celebrating World Spina Bifida and Hydrocephalus awareness, not just for one day, but for a whole week.
For each of the seven days of SBHI's Spina Bifida and Hydrocephalus Awareness Week (Monday to Sunday, 24th to 30th October), we will publish a member’s story on our website (www.sbhi.ie/aw2016). Then on Facebook and Twitter, we will encourage you to both read the member’s story, and to share your story as well.
Seven of our members and their parents, of all ages, from babies to young children, from teenagers to young and mature adults, have graciously and generously shared their experiences of adversity, strength, courage, and determination.
They are doing 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 you are not alone - that we are united, as one community, by Spina Bifida and Hydrocephalus.
One, or all, of the seven stories being shared by our members may resonate with you and your life now, or how it was when you were their age. If you like and connect with the SBHI Awareness Week stories, we encourage you to share them, and to share your experiences, using the hashtag: #WhatsYourStory?
Are you all ready to take part in SBHI Awareness Week? Great! So what will be your story? Get ready to share and don’t forget to use the hashtag: #WhatsYourStory?
Other hashtags you can use include: #SpinaBifida #Hydrocephalus #sbhi #unityindiversity