Help Sofija fight SMA TYPE 1 DONATION IN $AUD
Donation in Australian Dolars We are rising money to help support 10 month old Sofija Markuljevic and her parents (Stefan and Marija) on their journey to beat Spinal Muscular Atrophy Type 1 .
The money will be used to cover medical expenses and for INNOVATIVE GEN THERAPY “ZOLGENSMA” ( is indicated for the treatment of children less than two years of age with SMA. The product is an adeno-associated virus vector-based gene therapy that targets the cause of SMA. The vector delivers a fully functional copy of human SMN gene into the target motor neuron cells. A one-time intravenous administration of Zolgensma results in expression of the SMN protein in a child’s motor neurons, which improves muscle movement and function, and survival of a child with SMA ) unfortunately this genetic therapy is very expensive so we come here to reach people in this difficult time to help us Sofia’s dream become true.
IMPORTANT:
Currently, there are two ongoing campaigns raising funds for Sofia's treatment, collecting donations in euros https://www.gofundme.com/f/jkr8p-help-sofija-fight-spinal-muscular-atrophy-type-1 and Australian dollars ( this one ).
Total amount needed for Sofia's treatment is 2.4 million USD (2.1mil Zolgensema cost + 300k medical treatment).Any unused funds raised by both campaigns will be donated to the SMA Foundation so any little heart born with this genetic disease can have a chance to know what is life.
On August 7th,2019, Stefan and Maria got the devastating news that their beloved Sofia has a rare genetic disease SMA type 1.
As young first-time parents they never thought something was wrong because all the ultrasound and blood tests showed everything was fine.
Sofia was born as a healthy baby but soon after she turned 2 months she became to regress. She didn’t move her hands much, so Sofia's parents visited Paediatrician and after that visit, everything changed forever.
They sent them straight to Paediatric Neurology which trough a lot of days in the hospital and out and multiple tests discover that she has SMA.
As soon as they found out about the diagnosis, they prepared to fight with this disease and they knew it’s not going to be easy because SMA is very progressive.
Sofia got a chance to try a medication to slow down SMA progress but unfortunately, it didn’t work.
So we have a LAST CHANCE to try using Genetic therapy, that chance we CAN’T LOSE.
Stefan, as a recognized National Strength and Condition Trainer and a former basketball player, learned to never give up.
We hope that any small contribution will help us to achieve our GOAL and OUR GOAL is that Sofia can one day sit, stand, laugh, eat and play.
We are all in this together and together we can change a lot.
Not just for Sofia but for all the people with SMA.
