Boy, 2, with rare disease to undergo medical trial in US

AN IRISH boy with a rare brain disorder which claimed the life of his sister is set to become the youngest child in the world to undergo a pioneering medical trial.

Two-year-old Liam Heffernan, from Co Kerry, will jet out to New York later for this month with his parents, Tony and Mary, to receive the groundbreaking gene transfer treatment at the prestigious Weill Cornell University Hospital.

To date, only four American children have received the treatment. But one child spoke her first words just 10 days after her operation and began to walk with assistance a short time later.

Liam’s father, Tony, is hoping that Liam’s operation on May 3, which involves doctors drilling six holes in his skull, will slow the progress of Battens Disease.

The cruel condition claimed the life of the couple’s daughter, Saoirse, just three months ago.

Battens Disease is an inherited disorder of the nervous system. Affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. They become totally disabled and eventually die.

Tony said his family is still mourning the loss of Saoirse but they are now focusing all of their attention on Liam.

“Things are tough, of course, but the hope is always there, it’s always firing away in the belly,” he said. “Liam will be the youngest ever to undergo this procedure and he is also the strongest child ever to get it.”

Tony was in Dublin yesterday to promote a new YouTube tribute to Saoirse.

He hopes the touching movie will promote awareness of the national Battens Disease Charity of Ireland which is supporting a handful of Irish children with the condition.

The short animated video features the work of rising Dublin-based artist Mick Minogue and was shot by videographer Albert Hooi.

Irish singer, Lisa Hannigan, also agreed to allow her hit, Lille, to be used as the soundtrack.

Kerry native, Saidhbhe O’Shea, 12, from Kenmare, provided the voice-over.

The Bee For Battens charity sent a second Irish child, Amelia Ryczan, aged three, from Carrickmacross to New York on Tuesday to undergo a medical assessment to see if she is suitable for the trial.

* www.beeforbattens.org