I do now definitely feel a sense of achievement

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’!”


I am a very positive and lucky person

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.”


Jack makes us happy seeing him enjoying life to the full

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.”

 


I know Rosie will achieve great things

“I know that Rosie has a disability and is not the same as other kids who do not have a disability, however she will learn things in her own way and in her own time.

“To us, Rosie is amazing, she is a fighter. When she was a baby I would never have thought that she could live a ‘normal’ life. Now I know she will do well and go on to achieve great things.”

So, says Jennifer Fay from Dublin, speaking about her daughter Rosie, aged two, who lives with hydrocephalus. Rosie was quite ill as a baby and scans taken when she was a few months old confirmed that she has hydrocephalus.

Rosie began to make huge progress after her shunt revision surgery, she is now both walking and talking and attends a Montessori school for two hours each day!

“Life is much better now. I still worry about Rosie and her future and I have nights where I cry my eyes out,” says Jennifer.

“But I have to get out of bed the next day because if my children see me falling, they will fall – I have to be strong for them.

“I am very lucky to have Rosie and my son, Jack who is nine. I come from a big family – I have 11 brothers and sisters and my mam Deborah – and I get a lot of support from them which is great.”

Rosie was born in July 2016 and became quite sick at the end of November 2016. Jennifer thought she had a vomiting bug and brought her into Crumlin Hospital.

“I was one of those mothers who thought ‘my child is perfect, don’t point out anything negative to me about my child’. While I never noticed anything about Rosie’s head being swollen, others in the family did but they were afraid to say anything to me,” recalls Jennifer.

“Rosie would just lie in her cot not moving much, it was like her body was jelly. As there was a seven-year gap between my two children, I suppose I had forgotten what babies and their developmental stages were like.

“They did a head scan of Rosie in Crumlin Hospital and the next day I went in on my own and I was told that Rosie had hydrocephalus. I was distraught, I had never heard the word ‘hydrocephalus’ before, I could not even pronounce it.

“I thought it meant Rosie was dying and I was in total shock for a number of hours. I tried to calm down and got a nurse to explain hydrocephalus to me in more detail.”

Rosie remained in hospital for three weeks as she picked up several infections including pneumonia and a gastro bug.

“She was just lying there with wires coming out of her and I found it very hard, I got very depressed during that time.

“Then a neurosurgeon from Temple Street Hospital came in and what he had to tell me was a bit more positive. He did not want to insert a shunt in Rosie straight away but wished to take time to monitor her.”

Rosie came home from hospital for Christmas 2016 with the date set for her shunt surgery on 27th January 2017. However, in early January, Rosie began to deteriorate again, she was unable to lift her head.

Jennifer brought her back into hospital and the shunt surgery took place on 16th January. There were immediate improvements in Rosie’s health, she began moving her arms and legs and eating well.

“After the shunt surgery, Rosie continued to pick up every bug that was going and she stopped sleeping. She screamed her way through the night and was always crying,” says Jennifer.

“In April 2018, I noticed that her head had increased in size, her eyes were swelling, and she was getting sick. She slept for two days solid, so I called an ambulance and she was taken into Temple Street.

“The doctors took some fluid from her shunt and we were sent home. Jack made his Communion that May and after the Communion, I felt we were back to square one as Rosie’s head was increasing in size and I felt that shunt revision surgery was required.

“Rosie eventually had the shunt revision surgery and she has really been doing amazingly well ever since.

“She still does not sleep very well but I can cope with that. She is terrified of hospitals and frets whenever we have an appointment, however, once we leave she is grand.

“Rosie knows that she has a shunt and I talk to her about her shunt. The mistake I made was not realising that Rosie’s illnesses and all her complications with the hydrocephalus and shunt surgery etc. was having a huge impact on Jack.

“I kept the full impact of Rosie’s hospital stays from Jack, but he knew something was going on and he got very upset and was very anxious. He went through a terrible time but thankfully in the last four months he has come out of it and is much happier.

“Jack adores Rosie and is always protecting her – he won’t even let me give out to her.”

Jennifer admits that she was really traumatised by the news when Rosie was six months that she would never walk or talk. She says that it took a long time to get her ‘head around it’.

Once she came to terms with the possibility that her baby may never walk or talk, Jennifer says that she decided to try and treat Rosie the exact same as a child without any disability.

“I started pushing Rosie and encouraging her to walk.”

As the months went by, Jennifer noticed Rosie’s strength and her arm and leg movements improving. Shortly after her first birthday, Rosie began speaking a few words.

Jennifer then took Jack and Rosie on a holiday to Wexford and noticed Rosie starting to move around on her bottom and trying to pull herself up to a standing position by leaning on furniture.

“She kept falling down. I bought her a doll and a doll’s pram and one day she just started walking pushing the doll in the pram.”

“Jack and I just started screaming hysterically and Rosie fell down onto her bottom on the floor and started clapping – it was an amazing moment,” recalls Jennifer.

“Rosie’s balance was very bad, and she continued to fall over when she would walk but I always told her to pick herself up and forced myself to not rush over to her to lift her up.”

Despite the high of Rosie beating her prognosis by learning how to walk and talk, Jennifer continued to worry about the impact living with hydrocephalus would have on Rosie’s future.

“I know that Rosie is very clever, and I can see her going a long way, however, the worry is there. She is starting already to forget words that she has learned – she knew all her colours but currently is forgetting the word pink. So, I do worry about her future in case things deteriorate for her.”

Jennifer got involved with Spina Bifida Hydrocephalus Ireland through one of the organisation’s charity partners, Stephen Martin of the Marathon Man to Ironman Challenge.

“I know Stephen and one day a post about his fundraising for SBHI came up on my Facebook news feed, so I got in touch with him and he told me all about SBHI as I did not know there was a national organisation for people with spina bifida and hydrocephalus,” says Jennifer.

“He has been amazing to us and I thank him everyday for all he is doing not just for SBHI but for Rosie too.

“His Marathon Man to Ironman Family Fun Run in Corkagh Park at the end of June brought our families together with more than 30 of us taking part and it showed how much support Rosie has from her family – all thanks to SBHI and Stephen Martin!”

In the last few months, following an introduction to SBHI member Louise Larkin, an adult living and incredibly productive and busy life with hydrocephalus, Jennifer has much more positive outlook.

“I got chatting to Louise at the Marathon Man to Ironman Corkagh Park Family Fun Run for SBHI at the end of June and then I bumped into her some time later in a McDonald’s in Dublin,” says Jennifer.

“Louise is the most positive person I have come across in my whole life. I used to think that Rosie would never have any friends or mix socially. Now after getting to know Louise, how socially active she is, and how she has done so much in her life so far, I know that Rosie will go far in life.

“I just want Rosie to live her best life, to her best potential and I will do my best to get her as far as I can – I will take inspiration from Louise Larkin.”


Spina Bifida Hydrocephalus Awareness Week 2018

For five of the seven days of SBHI's Awareness Week (Monday to Sunday, 22nd to 28th October), we will publish two members’ stories on our website: www.sbhi.ie/aw2018 

Then, on World Spina Bifida and Hydrocephalus Day (Thursday, 25th October), we will share information to remind the public and policymakers that spina bifida and hydrocephalus are a reality; that it is imperative to increase awareness about them and improve the lives of people living with these conditions.

On Facebook, Instagram, and Twitter, we will encourage our members and the general public to both read, comment, and share the stories.

A total of 10 of our members, and their parents – from children, to young and mature adults – have graciously and generously agreed to share their #mysbhlife stories 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 they are not alone - that we are united, as one community, by spina bifida and hydrocephalus.

Speaking ahead of the week-long initiative, SBHI CEO, Tom Scott, said, ‘There are thousands of people living with spina bifida and/or hydrocephalus and yet many people in wider society remain unaware of this. This matters as 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.

‘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 the conditions to be a reality in their lives.’

Are you ready to take part in SBHI Awareness Week? Great! So, get ready to read and share our members’ stories and don’t forget to use the hashtags: #sbhiawarenessweek #mysbhlife

Other hashtags you can use include: #spinabifida #hydrocephalus #sbhi #disabilityawareness #unityindiversity #worldsbhday2018


Bereavement and Wellness Session

 

A session on coping with bereavement and loss and optimising your wellbeing for the future is being held on Saturday, 17th November at 1.30pm in the Kildare Branch premises at Piper's Hill Campus in Naas.

If you are interested in attending can you please message: Katie Dunphy (087 379 2051/ kdunphy@sbhi.ie) or the Kildare Branch (info@sbhikildare.com).


SBHI welcomes Workplace Relations Commission decision

In respect of a recent legal case, the details of which have been published here: https://www.workplacerelations.ie/en/Cases/2018/July/ADJ-00010034.html  

 

SBHI welcomes the decision of the Workplace Relations Commission which found the wearing of facemasks as direct discrimination on grounds of disability pursuant to Section 3(1)(a) and 3(2)(g) of the Equal Status Acts 2000-2015.

The management of the Secondary School applied an ill-conceived and discriminatory policy in relation to the wearing of facemasks and did not consider the full impact of their actions upon the child.

SBHI worked very closely with the family and exhausted all avenues before the family were left with no other recourse except to take the management of the Secondary School to the Workplace Relations Commission.

SBHI met with the school, advised the school that their actions were traumatising the child, the parents wrote to the Board of Management and we, SBHI, wrote to the Board of Management to encourage them to cease wearing facemasks due to the impact on a very vulnerable child in their care to no effect.

When actions, policies, and procedures are put in place that have the potential to affect the most vulnerable of children, consultation with both the child and their family/carers is vital.

We welcome the findings of the Workplace Relations Commission and hope that this does not occur again in the future for any of our members with spina bifida and/or hydrocephalus.

 


The 8th Amendment

The 8th Amendment

Spina Bifida Hydrocephalus Ireland (SBHI) acknowledges the conversation surrounding the expected upcoming referendum on the Eight Amendment. At SBHI we are committed to campaigning for everyone to be given consistent and accurate information when given a diagnosis of spina bifida and/or hydrocephalus in pregnancy.

We ask all Healthcare professionals who relay a diagnosis to:

  • Choose your words carefully and with compassion. This will be a difficult day in their lives and your words and approach will likely be remembered.
  • Acknowledge your level of understanding around spina bifida and/or hydrocephalus. What you know may not necessarily reflect the current advances in medical care. If you don’t know, let the parents know that you will find more information, or refer them to someone who can assist. This will be a difficult day in their lives and your words and approach will likely be remembered.
  • Be mindful not to infer blame; it is no one’s fault. While we know a number of factors that might be associated with SB, we really don’t understand all the genetic and environmental factors and interactions that cause SB/H.
  • Direct families to Spina Bifida Hydrocephalus Ireland (SBHI).

SBHI is a national disability organisation supporting over 2000 people across Ireland. SBHI has many resources that are useful and informative to families. Parents, their families, or healthcare professionals may contact our Family Support Team at any time. The role of the Family Support Team is to guide and support parents during challenging times.

Whatever the outcome of the expected referendum on the Eight Amendment, the guidance outlined above should be implemented for the benefit of anyone receiving a diagnosis during pregnancy.


Twenty-nine Irish charities receive donations from The Hospital Saturday Fund

SpinaBifida.jpg

 

Twenty-nine Irish charities received donations from the Hospital Saturday Fund at a special reception in Dublin recently. In total, €134,500 was donated to the medical charities and organisations at the event, which was hosted by Ardmhéara/Lord Mayor of Dublin, Mícheál Mac Donncha.

Among the beneficiaries was Chronic Pain Ireland which received a donation to help support vital workshops on pain self-management techniques. Cystic Fibrosis received a grant towards their independent living group and DEBRA Ireland’s grant will be used to provide a weekend camp for those with the genetic skin condition EB.  Also receiving grants were Fighting Blindness to purchase a RetCam scanner machine and the Irish Motor Neurone Disease Association will use their grant to fund specialised communication aids.  A grant was made to Dublin Wicklow Mountain Rescue Team to support their important work as well as the Kevin Bell Repatriation Trust to assist families of those bereaved overseas.

Speaking at the reception, The Lord Mayor celebrated the extraordinary work of all the charities receiving donations from the Hospital Saturday Fund.  Ardmhéara/Lord Mayor of Dublin, Mícheál Mac Donncha, who nominated St Francis Hospice as his chosen charity, remarked that this donation means that the hospice will now have the benefit of a special therapeutic bath for use by the patients in the specialist palliative care unit and this will provide pain relief and comfort to those patients.

Paul Jackson, Chief Executive, Hospital Saturday Fund said: “We are delighted to continue the tradition of supporting many charities in Ireland, many of which are less well-known. The Hospital Saturday Fund is honoured to support the efforts of such deserving charities and help in some way towards the exceptional, tireless work that they do.  We are delighted to have increased our grant making funds to €1.4 million in 2018 and this is an increase of 100% over the last five years”.

In 2018 the Hospital Saturday Fund will give €1.4m in donations and grants to medical charities for care and research, hospices and hospitals across the UK and Ireland. Assistance will also be given to individuals whose illness or disability has caused financial difficulties.

The following Charities received grants at the event:

Alzheimer Society of Ireland

Aspire - Asperger Syndrome

Aspire Ireland

Barnardos Republic of Ireland

CASA Breakhouse

Cheshire Ireland

Chronic Pain Ireland

Cleft Lip and Palate Association

CRY Ireland - Cardiac Risk in the Young,

Cystic Fibrosis Ireland

DEBRA Ireland

Dublin Simon Community

Dublin Well Women Centre

Dublin Wicklow Mountain Rescue Team

Helium Arts

Huntington's Disease Association of Ireland

Irish Community Rapid Response

Irish Motor Neurone Disease Association

Kevin Bell Repatriation Trust

Lauralynn - Ireland's Children's Hospice

Look Good Feel Better Ireland

MS Ireland

Neurofibromatosis Association of Ireland

Oesophageal Cancer Fund

Our Lady's Hospice & Care Services

Spina Bifida Hydrocephalus Ireland

Temple Street Foundation

St Francis Hospice (Lord Mayor’s Nominated Charity)

Fighting Blindness (Expression of Thanks speech)

 

 


Weather Warning February / March 2018

Weather warning Tuesday 27th February – Saturday 3rd March 2018

This advice is offered to all service users and members of Spina Bifida Hydrocephalus Ireland due to the weather warning currently in place from Met Éireann - https://www.met.ie/nationalwarnings/default.asp

If you are unsure of what steps to take in terms of keeping warm and eating well, please visit the following website for more advice: https://www.winterready.ie/en

If the offices of SBHI have to be closed this week, all staff will still be working from home or an alternative venue during normal office hours (Mon to Fri 9am-1pm and 2pm-5pm). This means that you can still contact staff, including the Family Support Team via their usual contact details: http://www.sbhi.ie/family_support_team SBHI will publish notices if our offices are closed.

If you need to contact a member of staff and are struggling to get through, please call Louise Healy, Respite and Recreation Manager, on 085 711 9087 

The following list has been suggested by SBHI staff to assist where relevant:

  • Be sure to stock up on enough spare water, during the last significant snow fall in Ireland some areas lost their supply for some time
  • Have enough food in the house 
  • Make sure you have enough fuel to keep warm (if you have a heater that requires such fuel)
  • If you need medicines or continence devices, make sure that you have enough to last for a few days
  • If you need assistance in any kind of emergency, please call the emergency services on 999 or 112


Give Spread the word

get updates