Special party to celebrate Saoirse’s life
Saoirse from Keel, Castlemaine passed away on January 18 as a result of the neuro-degenerative condition Battens Disease.
Today, in Killarney, a special birthday party will celebrate her life.
By coincidence, her birth date fell on the same date as World Battens Awareness Day — a fact not lost on her parents Tony and Mary who are preparing to turn heartbreak into something positive for the charity set up in Saoirse’s name.
“Every day has been difficult since Saoirse went to heaven but this will be a hard weekend for us,” mum Mary said.
“We will be glad to celebrate her birthday surrounded by family and friends, and not at home dwelling on things. It’s best that we, all her loved ones, are together on the day.”
The World Battens Awareness event takes place at The Kerry Way in Killarney between 12am and 7pm.
The Heffernan family, including Saoirse’s brother Liam, who also suffers from Battens Disease, hope to use the event to say a big thank you to the people who have helped raise hundreds of thousands of euro for The Saoirse Foundation.
To mark Saoirse’s birthday the balloons will be released at 3.30pm.
Her parents are confident she will be looking down on them, and particularly little Liam who returned on Sunday from the US where he received potentially life saving treatment.
“Liam has improved hugely, just last night he took a packet of crisps from the press and ate them, he hadn’t eaten solid food in months. It is the biggest positive we have seen in months. We were in tears,” Tony explained.
“We would have wanted Saoirse to get the same chance, the same treatment, but we are just hoping that the treatment will work for Liam.”
Mary said she is sure Saoirse is playing a part in Liam’s improvement. “Saoirse has certainly been minding her brother over the last few months, and is continuing to watch over him, we have no doubt about that.”
www.beeforbattens.org
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