Boy treated for Batten’s now off anti-seizure drugs
In addition to his new- found energy, the little boy from Castledrum, Keel, Co Kerry — who suffers from Batten’s Disease, a rare and fatal disorder — has been completely weaned off his anti-seizure medication.
“Before surgery, he was experiencing eight to 10 seizures a day,” said dad Tony. “Since surgery last May we think he may have had a total of three seizures. Over the past month his doctors slowly reduced his medication and now Liam is completely weaned. That’s a big, big step,” Tony said.
Liam’s parents and medical team are seeing month-on-month improvements in his speech and mobility, which they hope is down to the gene-transfer surgery; however, doctors are advising caution.
“They cannot declare for certain if the gene transfer can be considered successful, only time will tell,” Tony said.
The Heffernans lost their 5-year-old daughter Saoirse to Batten’s Disease in January.
Tony had thrown himself full-time into fundraising since March 2010 to meet the cost of treatment for his children in the US.
Recently, and with bills to pay, he had to make the difficult decision to return to work in Oslo, Norway, where he works as ship’s captain for gas company LNG.
Yesterday he was back on Inch Beach with his son: “I went back to Oslo three weeks ago, and it was very tough, I missed Liam and my wife Mary so much. So I took this week off to come home again. Saying that, my employers are very good to me and are doing their best to find something more suitable for me. Sixteen months was a long time to be out of work.”
With his focus back on fundraising, Tony outlines plans for a number of upcoming events including:
* A cycle in memory of Irish mountaineer Gerard McDonnell commencing this Saturday. For more information contact Barry Lynch on 087 2895021.
* A 5km family fun run around Kilkenny city. For more details contact Laura Keogh on 0877587440.
lBeeForBattens.org
CONNECT WITH US TODAY
Be the first to know the latest news and updates
