Our son Ali was born in April 2018. He was born earlier than we expected, We were very excited to welcome our baby boy into the world. Everyday it was a joy to see him but with him being born early we were also very worried and kept an eye on his progress as the days and weeks went past.

6 months passed and we noticed there was something wrong with our baby boy and that’s when our long journey started. We travelled a lot to different doctors, every night was filled with anxiety and sleepless nights but after searching for an answer our little boy got diagnosed with SMA (Spinal Muscular Atrophy) at just 8 months. Ali can’t walk, run or even eat because of SMA. This diagnoses absolutely broke our hearts in half.

Our son looks like every normal baby from the outside, smiling and laughing the day away….but at the moment we can only support him but this doesn’t secure his life…

The United States offers Spinraze drug also known as Nusinersen along with specialist doctors that specializes in Zolgensma Gene Therapy. This medication is part of the new treatment research. This medication exists to slow down the progression of the disease. Although this drug sadly doesn’t correct the main gene that causes the disease and sadly there isn’t any cure but we are fighting for more years with our little boy.

We provide Ali with physical therapy everyday and he also has a machine that provides him with air that is used at a everyday basis, but he is getting worse and worse and this drug is our only option.

Every parent wants what is best for their child and to see them grow and be independent…. for us all we want is to see him get better and hopefully for him to gain some of his mobility and for us not to be filled with anxiety everyday and every night.

The overall cost that we are trying to raise is $2.4 million which includes hospital costs. Ali is only 2 years old and we would like to have as much time as possible with our little boy