Help Sofija fight SPINAL MUSCULAR ATROPHY TYPE 1
Donation protected
We are raising money to 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” ( indicated for the treatment of children with SMA less than two years of age-old; 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 gen therapy is very expensive so we come here to reach people in this difficult time to help us make Sofia’s dream come true.
IMPORTANT: Currently, there are two ongoing campaigns raising funds for Sofia's treatment, collecting donations in euros (this one) and Australian dollars (Help Sofija campaign in Australian dollars). Total amount needed for Sofia's treatment is 2.4 million USD (2.1 Zolgensma 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 began to regress. She didn’t move her hands much, so Stefan and Marija visited Paediatrician which changed everything forever.
Paediatrician sent them straight to Paediatric Neurology, where after a lot of days and multiple tests in the hospital Sofia got diagnosed with 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 since 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 the LAST CHANCE to try and use 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, so neither will we.
We hope that every small contribution will help us to achieve our GOAL and OUR GOAL is to Sofia sit, stand, laugh, eat and play one day.
We are all in this together and together we can change a lot.
Not just for Sofia but for all the people with SMA.
IMPORTANT: Currently, there are two ongoing campaigns raising funds for Sofia's treatment, collecting donations in euros (this one) and Australian dollars (Help Sofija campaign in Australian dollars). Total amount needed for Sofia's treatment is 2.4 million USD (2.1 Zolgensma 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 began to regress. She didn’t move her hands much, so Stefan and Marija visited Paediatrician which changed everything forever.
Paediatrician sent them straight to Paediatric Neurology, where after a lot of days and multiple tests in the hospital Sofia got diagnosed with 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 since 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 the LAST CHANCE to try and use 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, so neither will we.
We hope that every small contribution will help us to achieve our GOAL and OUR GOAL is to Sofia sit, stand, laugh, eat and play one day.
We are all in this together and together we can change a lot.
Not just for Sofia but for all the people with SMA.
Fundraising team: Team Sofija (2)
Milos Bozovic
Organiser
Maja Milenkovic
Team member