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PostedMay04

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

Posted by Ramona in News | 0 comments

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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 1stcame 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 25thSeptember 2009. The Heffernan’s received further heart breaking news on March 2nd2010, 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 3rdof 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:  Reposing May 5th from 4pm – 9pm at the family home, Castledrum, Castlemaine, Co. Kerry.

May 6th:  12 Noon Mass of the angels in St Gobnaith’s Church, keel, Co. Kerry followed by burial in adjoining cemetery.

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

 

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