The Clare Champion Clare news, sport, entertainment and local notes
THE Ennis family of a tiny tot diagnosed with a rare genetic condition are hoping that the Banner county will back fundraising efforts to help pay for treatment in the US.
Olivia, known as ‘Livie’ Mulhern is just ten-months-old and has been diagnosed with Spinal Muscular Atrophy (SMA) – Type 1. Since her diagnosis parents Keith and Karen have launched a nationwide fundraising appeal to try and get Livie potentially lifesaving treatment with what has been described as “the most expensive drug in the world”.
As part of the campaign Ennis’ Caoilfhionn Mulhern, Keith’s cousin, has organised an online ‘Clare Goes Pink for Livie’ fundraiser which has been supported by a number of local businesses.
Caoilfhionn Mulhern explains that the fundraiser is due to be launched in the coming days and people will have a chance to win some fantastic prizes by making a donation to the appeal throughout the month.
“The kind and generous businesses of Ennis have been so forthcoming with their support and donations which we are so grateful for,” she says.
The family are also hosting a ‘virtual’ 5km walk on August 2, with members of the public encouraged to wear pink and take part while donating to the cause.
SMA is caused by a gene deletion that results in the deterioration of Livie’s nerve cells that connect her brain and spinal chord to her body’s muscles. The muscles she uses for crawling, moving her head and even swallowing and breathing are becoming progressively weaker and are shrinking rapidly. Without any treatment, it would be unlikely that Livie would survive beyond her second birthday in August 2021.
The treatment for SMA type 1 is a gene therapy medicine called Zolgensma. It is a one off infusion treatment that is currently only available in the United States and Japan at a cost of $2.1m dollars per administration and is only available to children under the age of two.
Caoilfhionn tells us that Livie’s diagnosis was “devastating” for her family. “Her nerves are gradually deteriorating so she is currently struggling with the everyday movements of a 10 month old like grabbing, turning her head etc.”
However, she says that the treatment in the US offers hope. Two previous fundraisers have already been held here in Clare in recent months which have been generously supported.
Caoilfhionn says that the donations and help that Keith and Karen are getting from the Clare public is greatly appreciated. “From our perspective, being a family based in Clare, we are doing all we can to help our cousin’s fundraiser. We have already fundraised €7,755 through two fundraisers. So many people have been so generous here. Livie’s family are based in Meath so they are a bit far removed from here, but they are delighted to see the support. It’s great to see people rallying around this child who can’t fight for herself, she’s not even one yet. She needs people to fight for her.”
Livie’s family received some “bittersweet” news last week, receiving a €1 million pledge from another family who had fundraised for their own son’s treatment, however it has been decided he is not a suitable candidate. The donation has been made by the Do It For Dan campaign, organised by the parents of Dan Donoher. Dan had also been diagnosed with SMA type 1, and a massive fundraising campaign raised over €3 million towards his care earlier this year.
Commenting on the €1 million pledge, Livie’s mum Karen said, “Our hearts are breaking for Niall, Aisling and little Dan. We are utterly blown away by their generosity of spirit and we simply cannot ever thank them enough for this. They have given Livie a fighting chance.
“Since her her diagnosis back in April- which was during lockdown – we have been overwhelmed with the kindness of people. Their ingenuity when it came to socially distanced fundraising, their dedication to the cause and persistence has helped us to believe we can do this. We’ve had a 75km football solo challenge, virtual concerts, even lemon eating challenges on social media. It is an incredible amount of money. Our dream is to have raised the remaining money by the time Livie turns one in August, but we still have a long way to go.”
To donate to the Clare fundraiser check https://www.gofundme.com/f/x98kj-clare-goes-pink-for-livie for details.
