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BUMBLEance

#LittleLiamo (5) Tragically Loses Battle Against Batten Disease.

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Little five year old (5) Liam Heffernan (#LittleLiamo) has peacefully passed away in the arms of his Parents Tony & Mary Heffernan, at 6:58am this morning (May 4th) following a battle for life against Batten’s Disease at the family home in Keel in Co Kerry.

Liam who enjoyed life and was known across the world for his passion for dinosaurs and books, had a rapid deterioration in his condition and finally lost his battle against Battens Disease, an ultra-rare neuro degenerative brain disorder. Liam will be waked at the family home before being buried alongside his big sister Saoirse at the local Keel Cemetery.

Liam, and his parents Mary & Tony, we brought home from Kerry General Hospital on April 30th in the BUMBLEance, (www.BUMBLEance.com) which their charity, The Saoirse Foundation owns and operates to transport sick children across Ireland to and from hospitals, respite centres, national treatments centres and family homes. The family would like to thanks the doctors, nurses and carers who helped Liam and his parents over recent weeks. Saoirse, who at the tender age of five (5), lost her life on Jan 18th 2011, also had the fatal condition, late infantile Batten Disease.

Liam’s story and that of his sister Saoirse have captured the hearts of the nation and beyond over that past 4 years and their relentless positive campaign for sick children has been covered numerously across every TV network, newspaper and radio station in the country. Since the little kids story 1st came to light following her parents’ emotional appearance on The Late Late Show in March 2010, the children’s parents, Tony & Mary Heffernan described how their life had been turned upside down since the diagnosis of their only daughter with the devastating Late Infantile Batten’s Disease, on the 25th September 2009. The Heffernan’s received further heart breaking news on March 2nd 2010, that their only son Liam also has the fatal condition.

After Saoirse death, the couple fought to save their only remaining child’s life and travelled to New York, when on the 3rd of May 2011, Liam underwent an eight hour brain surgery as part of a medical treatment trial at Weill Cornell New York Hospital. This medical trial provided the family the only hope of extending Liams Life and the family are grateful to all of those who helped extend and improve Liams Life so a short period after the procedure.

Tony & Mary Heffernan, who’s wedding anniversary coincides with the devastating loss of their only remaining child, stated, “we now face our biggest fear, which wasn’t just picking up the white coffin casket of our son Liam, but lowering Liam into his grave, alongside his sister Saoirse, we now face this in the coming days”.

The Heffernan’s, who launched “Bee For Battens, The Saoirse Foundation” also in March 2010 are devastated at the loss of their little angel Liam, who’s condition had deteriorated at an unprecedented pace in the past week.

The Heffernan’s and their charity The Saoirse Foundation, which is also behind the BUMBLEance, the world’s first interactive active children’s ambulance service which launched in Sept 2013 & are behind Liams Lodge,(named after their son) which will be Irelands first dedicated National Respite Centre for Rare Disease, which will be built on a dedicated 10 acre site in Tralee County Kerry, The Heffernan’s plan to commence construction of the centre in 2015 & urge public, corporate and government support for their Liams Lodge project so that it can be opened in 2016.

The Heffernan’s will forever campaign to raise awareness of Batten’s Disease, support families and fund treatment trials and research into this cruel fatal disorder which has taken their entire family.

Funeral arrangements are follows: Reposing May 5th from 4pm-9pm at the family home in Castledrum, Castlemaine, Co. Kerry.

May 6th: 12 noon mass of the angels at St.Gobnaiths Church, Keel, followed by burial in the adjoining cemetery.

For further information contact Eileen Keary on 0872961662 and Saoirse Foundation office on: (083 00 44444)

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The Heffernan’s mark National Rare Disease Day as a family at home

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Saoirse Heffernan lost her battle with the rare disease, Battens Disease in 2011 at age five. Her parents, Tony and Mary Heffernan set up The Saoirse Foundation in her honour and in the honour of those currently living with genetic & rare diseases affecting people in Ireland. Their son Liam, now 5, was also diagnosed with Battens Disease at age two and has just outlived his sister Saoirse by one week.

Since the charity was developed it has greatly aided in highlighting not only Battens Disease through their Bee for Battens project but has also assisted families and children living with other rare diseases around Ireland via family supports throughout all of life, research and assisting in the bereavement process. Worldwide there are over 7000 known rare diseases. In Ireland, between 6 -8 % of the population will be affected by rare disease; up to 70% affected are children, 30% of whom will not live past the age of five.

Tony Heffernan said “National Rare Disease Day is so important to keep the public aware of rare diseases affecting people from every parish in Ireland. These diseases can sometimes effect only one or two people in Ireland however they still need attention and funding as much as the more common diseases.  We will be marking National Rare Disease Day by spending the day with Liam as a family. This is what is important to us right now and nothing gives me more joy than spending time with Liam and Mary”.

Following many uncomfortable trips in ambulances and cars to treatment centres the Heffernan, through The Saoirse Foundation have created the World’s first interactive children’s ambulance service. The BUMBLEance provides scheduled transportation for sick children to and from their appointments. Parents can travel with their child in the back and the family has full access to a Sony Playstation, an iPad with full itunes library of books, movies and music, control of the lighting and sound and essentially their entire environment.

The child is in control of the journey which results in the child and parents arriving to sometimes very difficult procedures or treatments in a relaxed state. The medical community have commented that this has an enormous knock-on effect throughout the entire hospital visit. BUMBLEance’s goal is to have five BUMBLEance’s on the road, one for each county and one for Dublin alone. People can donate €4 by texting Buzz to 50300 or donate their old mobile phones to the Foundation.

The Saoirse foundation is also behind Liams Lodge, Irelands first dedicated respite centre which will be based in Co Kerry and provide a home away from home for families of sick children from all over the country. It will be a place for families to come to escape the day-to-day life at home and full medical care is provided on site for visitors. Formal planning permission will be lodged with Kerry County Council in March. www.Liamslodge.com

Tony Heffernan is the Parent and Patient Representative on the Minister for Health’s Steering Group for Rare Disease which was established in 2011 and sanctioned Ireland’s First Rare Disease Plan which is due to be published shortly. The group works with the Department of Health in creating and developing a five year national plan on Rare Disease.National Rare Disease Day 3

 

We Are Recruiting- Head of Fundraising

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jigsaw

 

 

 

The Saoirse Foundation Continues to grow and with this we are now seeking a Head Of Fundraising:

 

JOB TILE: Head of Fundraising – The Saoirse Foundation
LOCATION: Munster Based
APPLICATION CLOSING DATE: 5th December 2013 JOB DESCRIPTION:
The Head of Fundraising is responsible for setting fundraising targets and objectives for the organization. The role will require leadership of the fundraising strategy, ensuring it has a clear vision and will manage the human and financial resources necessary to deliver accordingly. The Head of Fundraising will be responsible for the sustainable development and growth of fundraising income within its operating mandate. The individual will lead, support and inspire staff members, volunteers, supporters and partners.
Candidates should be experienced and proven fundraising leader, capable of managing & growing a volunteer network team of size and possessing qualities necessary to lead at a time of challenge. The individual will have the capacity to give experienced direction and bring focus to the fundraising network, establishing clear fundraising objectives and deliverables, while harnessing and leveraging the inherent experience that exists within the organisation.
Core competencies will include strategic thinking and leadership skills with the ability to influence the non-for-profit sector at the highest level. Candidates must be exceptional communicators with the ability to inspire, engage and influence stakeholders and to pro-actively support the organisation to secure a balanced and sustainable funding mix.
This is an exciting opportunity for an enthusiastic individual with a can-do approach to make an impact on a growing non-for-profit and make positive life impacts for sick children.
Key Responsibilities/Main Duties:
      Responsible for all aspects of Fundraising activities including
         o Events
         o Campaigns
         o Volunteers
         o Donors
         o Corporations
     Management & Training of Volunteer network
     Manages fundraising environment in line with targeted financials

 

CV’s and a cover letter should be sent to:

The Saoirse Foundation

Carnan House,

Castledrum,

Castlemaine,

Co Kerry.

& by email to info@saoirsefoundation.com

 

The Saoirse Foundation is an Equal Opportunities Employer.

BUMBLEance Launch 6th September 2013

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World’s first Interactive Children’s Ambulance Service launched by

Irish Non-Profit Charity, The Saoirse Foundation

 

 BUMBLEance will facilitate scheduled hospital/ treatment visits for children that meet set medical criteria

 

BUMBLEance, the World’s 1st interactive children’s ambulance which was revealed today for the first time, is the brainchild of Tony Heffernan, who along with his wife Mary founded the Saoirse Foundation in March 2010 after their late daughter Saoirse, who passed away in Jan 2011.

The Heffernan’s reasons for creating BUMBLEance are clear: “Speaking from our personal experience, we saw the stress our late daughter Saoirse experienced when undertaking many ambulance journeys from the family home in rural Ireland to the National Children’s Hospitals in Dublin.  We decided that there was no point doing nothing about it”.

Every parent knows that an ambulance journey with a child can be very traumatic, however within BUMBLEance, fun will be the medicine of the day, making an ambulance journey less stressful and fun. The 132-registered vehicle will be used to transport sick children to scheduled appointments between home and the various National Treatment Centres and Hospice /Respite Centres.

The Saoirse Foundation is very hopeful of support from the business community and members of the public. These donations are integral to the future of the BUMBLEance service in Ireland and its growth. The charity is also hoping to collect 30,000 used mobile phones, sufficient to allow the service operate for 52 weeks of the year.

What makes BUMBLEance different is that it looks like a giant Bumble Bee on the outside. Inside, all of the necessary state of the art medical equipment is hidden and instead the child will experience a comfortable journey with their parents surrounded by all the latest gadgets and gizmos.

The latest AV equipment is inter-connected onboard via a “Control 4” system and allows the child, using a single controller, to operate the 19-inch LED TV, DVD, iPad, Nubi, and Sony PlayStation console, with a full library of films, apps, e-books, music and games available, from the comfort of the latest Ferno stretcher.

The on-board dual channel WiFi allows internet browsing, social media engagement as well as Skype calls to be made to anywhere in the world. Members of the public will be able to message or tweet their best wishes to the child on-board, who can track their progress using satellite monitoring. There are also two fridges available to the family, to store necessary food, beverages and medicine.

Minister Frances FitzGerald attended the launch with RTE’s Miriam O Callaghan, is very supportive of this unique and essential service.

Minister Fitzgerald said: “I wish to congratulate the Saoirse foundation on the innovative, child-centred approach they took in developing the BUMBLEance. I hope in the future that we will see more developments in healthcare and other fields which are designed around the child just as the BUMBLEance is”.

Joanna Fortune, Child Physiologist at Solamh Clinic, stated: “This is a superb initiative by Tony Heffernan and The Saoirse Foundation.  There is no doubt that the child friendly, fun and sensory engaging BUMBLEance will serve to decrease the levels of fear and anxiety of young children who have to travel to and from hospital by Ambulance”.

Joanna added “Neuro-scientific research shows the areas of the brain that are stimulated by physical pain are also activated by emotional pain including stress, fear and anxiety.  A stressful journey when already in physical discomfort serves only to exacerbate the physical symptoms for the child however traveling in the BUMBLEance alleviates the stress and fear associated with ambulance travel for children and so they arrive for treatment in a much more contained and relaxed state of mind…as the Heffernan’s say “Fun is the medicine” here.

Joanna concluded “I believe the BUMBLEance is a child friendly environment serving to emotionally regulate an anxious child as well as anxious parents meaning they arrive in the hospital in a calm, contained, content state, which also helps the Doctors in treating the child”.

BUMBLEance has partnered with Lifeline Ambulance Service, who will provide their professional services and supports to the charity at cost. This is a not for profit venture and the main aim of this service is for fulfil the Saoirse Foundation mission of making positive life impacts for sick children. The service will be available to patients that qualify for the service under strict medical criteria and each client will be booked in advance into the BUMBLEance’s busy schedule.

Not only is BUMBLEance the World’s first interactive CHILDREN’S AMBULANCE SERVICE, it is also the world’s most modern & energy-efficient ambulance. Safety is the first priority though; the ambulance chassis is an upgraded Mercedes 519 vehicle, and all Lifeline staff are Garda vetted and have received additional training to manage the transportation of children with any condition.

David Hall from Lifeline said: “Tony and I made initial contact on Twitter and we then met to discuss the concept. I acknowledged that there was a gap in the ambulance sector for such a service. We are delighted to be associated with this innovative but extremely relevant venture. The concept of paediatric transfers is not new, but no Irish child is likely to have experienced the type of child-friendly ambulance transport service that will shortly be available to eligible patients.”

Tony Heffernan added: “Our vision is to have one BUMBLEance for each province by the end of 2015 plus an additional BUMBLEance for Dublin. We want to be in a position to offer this service to every parent of a sick child that requires ambulance transportation to appointments and would ask everyone to support us and also to send us old mobile phones to guarantee the growth of our service. In the future we hope BUMBLEance will take off, literally.”

You’ll Never Walk Alone, Jamie Carragher Joins Our Team!

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“You Will Never Walk Alone” is the message being sent across Ireland today as Liverpool Legend Jamie Carragher & his Charity “the 23 Foundation” team up with The Saoirse Foundation, to support sick children & those affected by rare & genetic disorders and Irish charity’s mission statement to “Make Positive Life Impacts For Sick Children”.

 

Tony Heffernan  & Mary Heffernan founderd of the Kerry based charity is absolutely thrilled with the news & partnership with the 23 Foundation, speaking from his home in Kerry, stated;

 

 “We are thrilled to announce this new partnership, it gives our charity an endorsement from one of the world’s best loved and well known premiership footballers of all time, we will work very closely with Jamie and his team, our initial focus will be primarily on building Liams Lodge and our growing our BUMBLEance service”.

 

“Being part of a team and achieving something together is much more satisfying and I know without the help of my team and teams with which I grew up with I would not have become the individual I am today. I want to help as many children as possible to have a better life. The 23 foundation promotes the idea of “we” and “us” because together as a community and with help from people like you reading this, we can accomplish anything.”  Jamie Carragher

 

Jamie Carragher is a living Liverpool FC Legend, a footballer who played as a defender for the Premier League side for 17 years. A one-club man, Carragher started his footballing career at the Liverpool Academy, making his professional debut in the 1996–97 season and becoming a first team regular the following season. Jamie was Liverpool’s vice-captain for 10 years, and is the club’s second-longest ever serving player, making his 737th appearance for Liverpool in all competitions on 19 May 2013.

 

“Liams Lodge” is named after Tony & Mary Heffernan’s son Liam, who is terminally ill with Batten Disease, will be Irelands 1st National Respite Centre for children with generic and rare conditions. The Heffernan’s lost their old other child Saoirse, who died from Batten Disease on the 18th of January 2011, aged five years. The Centre will be located on a 10 acre site in Blennerville Tralee Co Kerry.

 

23 Foundation & Saoirse Foundation Partnership

23 Foundation & Saoirse Foundation Partnership

BUMBLEance is the world’s first interactive national ambulance service for children, launched on September 6th, the world’s most modern ambulance entered service recently to transport sick children across the country,  in and out of the various children’s hospitals and treatment centres & hospice. (see You Tube BUMBLEance Launch)

 

The partnership is calling on the public and business communities to get involved and help to build Liams Lodge. We are currently seeking companies to not only consider to “adopting a lodge” and where possible to donate building materials and services to help build the centre.

Carragher also holds the record for the most appearances in European competition for Liverpool with 150. His honours with Liverpool include two FA Cups, three League Cups, two Community Shields, one Champions League, one UEFA Cup and two Super Cups.