The Buzz Blog - News


Saoirse Heffernan Passes Away

Posted by Bee For Battens in News | 31 comments

blog post image

Little five year old (5) Saoirse Heffernan has peacefully passed away in the arms of her Parents Tony & Mary Heffernan, at 1am this morning following a battle for life against Batten’s Disease at the family home in Keel in Co Kerry.


Saoirse who enjoyed a peaceful Christmas with her family had some serious complications soon after and she finally lost her battle against Battens Disease in the early hours of this morning. Saoirse will be waked at the family home before being buried at the local Keel Cemetery on Thursday. The family would like to thanks the doctors, nurses and carers who helped Saoirse and her parents over recent weeks.


Saoirse’s story and that of her brother Liam have captured the hearts of the nation and beyond over that past 10 months since the little girl’s story came to light following her parents’ emotional appearance on The Late Late Show in March 2010. When Saoirse’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 2nd, that their only son Liam also has the fatal condition.


The Heffernan’s, who launched a national charity for Battens Disease, “Bee For Battens, The Saoirse Foundation” also in March, are devastated at the loss of their little angel Saoirse, who’s condition had deteriorated at an unprecedented pace since her return to Ireland in October from the US, where she narrowly missed out on a potentially lifesaving medical treatment trial at the Weill Cornell Facility in New York.



The Heffernan’s and their charity Bee For Battens, The Saoirse Foundation are hopeful though, that Saoirse’s little brother Liam will go to the states for assessment and participation in the treatment trial early this year,. 


The charity is continuing its campaign to raise awareness of Batten’s Disease, to support families and fund treatment trials and research into this cruel fatal disorder.

Comments on this Article

    Sue Cleary 04/03/2011

    MY deepest sympathies on the loss of your little angel Saoirse, i cant imagine your pain.God bless you and your family and we will keep Liam in our prayers x

    valerie barrett and family 25/01/2011

    my thoughts and prayers are with you anthony and mary at this difficult time.

    Avril Kennan 24/01/2011

    Tony and Mary, our heartfelt sympathies for the loss of your precious little Saoirse. From all in DEBRA Ireland.

    Maureen Heffernan Carney 22/01/2011

    Something told me to check out the site to see how Saoirse was doing. My deepest sympathy for the loss of your precious daughter. She is in the arms of our Father now and I pray that he will continue to give you strength.

    Fiona 22/01/2011

    Miss you so much my dotie little woman xxx

    fiona kruis 21/01/2011

    My thoughts and prayers are with you and your wonderful family at this time.As a mum myself i can only imagine the pain and grief you are experiencing. I hope all the best for liam and success in the trials in the US and hope that all this will have a positive outcome for you.Treasure your memories and hold that angel close to your hearts she will never be far away

    Mary & Mick O'Callaghan 21/01/2011

    Our deepest sympathy to you all on the death of Saoirse. May she rest in peace

    C.ODonnell 20/01/2011

    So sorry to hear of the passing of your daughter.May she rest in peace. Ar dheis de go raibh a hanam

    Debby 20/01/2011

    Although you don't know me, your story has touched me. I wish you comfort and peace as you grieve the loss of your sweet Saoirse.

    Jack Murray 19/01/2011

    Tony, Mary and Liam. I am so sorry for you all on the loss on Saoirse. I have got to know you over the last few months and you are the best parents that any little girl, or boy, could wish for. You give everything you have to Liam and Saoirse. I cannot imagine the hurt you must feel in your hearts now, and my thoughts are with you. Jack Murray

    Pat Barry 19/01/2011

    Condolences to Tony, Mary and Liam. God Bless you all - I know Saoirse is looking over you

    Mike Curran 19/01/2011

    Terribly sad news and my sympathies to the Heffernans. I hope they can find the strength in time to help them continue to fight for the treatment to help Liam and others hopefully overcome Battens.

    Eibhlin Mulroe, IPPOSI 19/01/2011

    Our deepest sympathy to you all, our thoughts are with you, may she rest in peace.

    Lisa McMahon 19/01/2011

    God bless little one, may you rest in peace, free at last of this terrible disease x

    Noel Doyle, Derry 19/01/2011

    So sorry to hear this sad news. May little Saoirse rest in peace

    Laura Foster 19/01/2011

    Deepest sympathy to Tony, Mary and Liam. You have lost a beautiful, precious little girl. Saoirse, rest in peace little angel.

    Emer Sherry 19/01/2011

    We are so sorry to hear of Saoirse's passing. Our thoughts are with you at this most difficult of times. From all of us at the Mid South West Disability Info team and Mid West Parents.

    Yvonne Daly 19/01/2011

    I am very sad to hear the news that Saoirse's difficult battle has come to an end. Ar dheis Dé go raibh sí dílis, mar aingeal.

    Orla Dusoswa 18/01/2011

    Heaven Gains Another Little Angel... And what can we do only sorrow for your parents' loss and be jealous of the heavens gain. ANGEL WARRIOR - Sleep Well but your battle, strength and inspiration will never be forgotten.

    from the smyth family tralee 18/01/2011

    Im so sorry.I will say a for prayer for her every night.

    beverley smith 18/01/2011

    so so sorry to hear this sad news , my heart breaks for you as i'm a newly diagnosed parent too and this devastates me , your beautiful Angel will always be with you may god bless you and be with you R.I.P LIL ONE.....FLY HIGH XX

    Martina Griffin 18/01/2011

    My deepest sympathies to you all on the sad passing of Saoirse. While she is now out of pain and suffering, she has taken her spot as a little angel in the sky. May she rest in peace. XXXX

    Aine Byrne 18/01/2011

    So sorry to hear the news. Saoirse was a beautiful, radiant girl and she has touched more people than you could know. Heaven is blessed to have an angel like her. My thoughts and prayers are with you all.

    Grett O'Connor 18/01/2011

    I only met Saoirse, Tony and Mary once but I will always remember all three of you. I wish you strength and courage to keep fighting now for Liam's sake, and I send you my sincerest sympathy at the loss of your precious little girl.

    Anne Marie Browne 18/01/2011

    Our thoughts are with you and your whole family. Rest in peace Saoirse

    Anne Marie Browne 18/01/2011

    Our thoughts are with you and your whole family. Rest in peace Saoirse

    ann kelly 18/01/2011

    my prayers are with you what a brave little girl who has touched so many people heaven is now a richer place can only imagine your pain love and prayers to you both x x x

    Gobby Dineen 18/01/2011

    RIP little Angel Saoirse xx

    Heather Sickelmore 18/01/2011

    As a member of the Batten Disease Family Association and also a mum of a young man with Juvenile Batten disease I want to send you my sincere condolences on the sad loss of your daughter. I met Tony once at the initial meeting of the International Batten Patient Association and I was very struck with Tony's obvious strength and determination to do everything he could for his family. I was amazed at how much you had achieved so quickly. My thoughts are with you at this very difficult time. Heather

    Hannah Ross 18/01/2011

    My deepest sympathies to you all on the death of your very precious daughter Saoirse. You are the most amazing parents to both your children and my all your precious memories bring some comfort at this awful time. What a brave fighter little Saoire was, she is now as free as a butterfly. Sleep well.

    Noel Cuddy 18/01/2011

    So sorry to hear this news. Deepest sympathy to Tony, Mary& Liam. Rest in peace little angel. from all the members of Special Needs Parents Association

Add A Comment

Bee for Battens Bee for Battens