Leg It For Livie
Donation protected
We are currently fundraising for Olivia (Livie), she is 9 months and she has been diagnosed with Spinal Muscular Atrophy -Type 1.
This is a devastating diagnosis for Livie and her family. Her nerves that connect her muscle tissue to her spinal cord and brain are gradually deteriorating so she is currently struggling with the everyday movements of a 9 months old like grabbing, turning her head, crawling, swallowing etc. Without the right treatment, it is unlikely for children in her situation to live past their 2nd birthday.
There is hope! A treatment is available for Livie in the USA. It is called Zolgensma and is known to be "the most expensive drug in the world." This treatment comes with the hefty price of over $2.2million.
Myself and 2 friends are doing a run and cycle to raise money to help Livie get the treatment she deserves. We are running from Mountcharles Pier to Murvagh Beach and cycling back, clocking up approx. 150 km between us.
Donate what you can, big or small.
#teamlivie #abetterlifeforlivie
This is a devastating diagnosis for Livie and her family. Her nerves that connect her muscle tissue to her spinal cord and brain are gradually deteriorating so she is currently struggling with the everyday movements of a 9 months old like grabbing, turning her head, crawling, swallowing etc. Without the right treatment, it is unlikely for children in her situation to live past their 2nd birthday.
There is hope! A treatment is available for Livie in the USA. It is called Zolgensma and is known to be "the most expensive drug in the world." This treatment comes with the hefty price of over $2.2million.
Myself and 2 friends are doing a run and cycle to raise money to help Livie get the treatment she deserves. We are running from Mountcharles Pier to Murvagh Beach and cycling back, clocking up approx. 150 km between us.
Donate what you can, big or small.
#teamlivie #abetterlifeforlivie
Organizer and beneficiary
Conor Browne
Organizer
Team Livie
Beneficiary