An Irish couple are in the final push to raise money for the world’s most expensive drug to try and save their daughter’s life.
Keith Mulhern and Karen Vickers, who live in Balrath in Meath, have made a desperate plea to raise funds for little Livie, who has spinal muscular atrophy type one.
SMA is a condition that causes the nerves connecting the nervous systems to the muscle to break down and eventually completely waste away.
It was previously thought to be fatal in young children, but new once-off gene therapy called Zolgensma which costs $2.1m can provide a lifeline to youngsters with the condition.
Her devoted parents have less than €400,000 left to raise for their baby girl and have asked for assistance from generous donors ahead of her first birthday on August 26.
Her parents said: “We have never felt a love like this.
“It was incredible for us to see our first child smile, laugh and babble for the first time and watch her develop her little bright, affectionate and loving personality.
“Livie brings such joy and happiness to our lives every day and her smile can brighten the whole room even on the rainiest Irish day.”
Livie received €1m last month after the Do It For Dan campaign sadly ended after discovering that Dan Donoher could not receive zolgensma due to a virus he had contracted.
It meant that their fundraising target was cut in half and now they are well over half way to being able to afford Livie’s treatment.
Keith added: “A huge amount of money has been raised so far and it is a testament to the countless number of individuals who have worked towards this and supported Livie so far.
“The Donoher family and fundraising team have made an incredible gesture and pledged €1,000,000 toward the cost of Livie’s treatment.
“We still have a long road ahead to raise the rest of the funds, but when we do, we will finally be able to pay for Zolgensma, giving our gorgeous little Livie the greatest chance at life.
“We cannot thank the Donohers and the team behind Do It For Dan enough for this, it’s a light at the end of the tunnel.”
On August 2, people have been encouraged to “To Go Pink for Livie” and walk, run or jog to raise money for the little girl.
