A mother whose baby girl needs ground-breaking treatment for a rare genetic condition has said a huge donation from another family was “just incredible.”
10-month-old Olivia Mulhern was recently diagnosed with Type 1 Spinal Muscular Atrophy.
On Newstalk Breakfast this morning, her mother Karen said the condition affects all of her muscles – from those she needs to breathe and swallow to those needed to life her head of sit up.
“It is all affected because this vital gene she actually doesn’t have in her system which is necessary to send signals to your muscles to do stuff,” she said.
“So, without this gene and without that protein that is sent from it, the signals are not going to the muscles and the muscles are just wasting away effectively.”
The family have launched an online fundraiser to get Livie to the US for a once-off gene therapy which costs around $2.1m (€1.86m).
10-month-old Olivia MulhernDoctors have told the family that, without the treatment, Livie is unlikely to live past her 2nd birthday.
“Some families that have travelled to the States to get this treatment have seen incredible results,” said Karen.
“Children that were choking on their food are now swallowing again. Children that could not sit up and sitting up. Children that couldn’t walk are standing now and taking their first steps so it is just incredible.”
The online fundraiser has now reached nearly €590,000; however, Livie is even closer to accessing the treatment thanks to an “incredible” donation from another family whose young child is suffering from the same condition.
The ‘Do it for Dan’ campaign has donated €1m to Livie after learning that their son Dan is not able to receive the treatment.
Karen said Dan’s mother Aisling has been a great support ever since Livie was diagnosed.
“Unfortunately, it is devastating for them but Dan can’t receive this treatment in the States,” she said.
“I can’t believe it. It is such an emotional and difficult time for them and they just put that aside and pledged to donate €1m towards the cost of Livie’s treatment which is just incredible.
“It just shows what incredible people they are to do that at such a devastating time for them.”
She said the donation has “really given us a fighting chance of reaching the target for this treatment” – noting that the campaign is now just about €400,000 short of reaching its target.
