Help Hirad to receive his life saving Zolgensma Treatment

Other options for Hirad

If we cannot make it to collect this amount to treat Hirad’s condition with Zolgensma we will try our best to get one of the other two alternative medicines that are existing for him. If anything happens that he won’t need a therapy anymore, all the raised amount will go to another child with SMA from Iran. If we get to a complication in choosing one patient, medical devices will be organized and donated to the SMA society of Iran for the children in need of medical equipments.
These are terms that all parties have agreed on and the agreement was signed by EliMo Alapitvány charity and Hirad’s parents, his legal representatives.

Hirad’s Story

My beautiful Hirad, my sweet son. I named you Hirad, because it means the fruit of your parents’ love .You were the fruit of my love, the result of 7 years of waiting and expecting a child to be my world, to look at you in every moment and say thank you to God, as I do not want anything more from this world, just to see your smile.

And being a kindergarten teacher and hugging dozens of cute and sweet-talking children each day made this expectation harder, imagining you day by day.
Finally you came on a winter day in 2019, Baba Hamed and I had everything we wished for. We felt we opened all the closed doors, you completed our happiness with those black marble eyes and beautiful face.

But this happiness did not last more than a year. Baba Hamed and I, like all moms and dads, had a vision for you to grow up big and strong. An we envisioned that at every milestone you will have, every time you roll over or stand up, and finally when you are going to walk, our hearts will melt like sugar.

But it had never happen! We kept asking and questioning why don’t you roll anymore? Why don’t you walk like all the kids at your age? Even your neck and arms were getting looser every day, you couldn’t conrtol them. It took a year and you did not walk.

We took you to a pediatric neurologist: “Your son’s disease is a genetic condition called SMA (spinal muscular atrophy) “.A very rare disease in which if both parents are carriers, the child has a 25% chance of getting sick. But in our case when only your mom is the carrier, there was only a 1% chance of a genetic mutation. Unfortunately, this disease makes a child weaker and weaker until to the point of death.
The doctor said this very simply, but I understood it very hard. Can this be possible? One percent chance for me who have done all the necessary tests for pregnancy? We had no family relationship with each other.
Baba Hamed asked about the treatment. “There is no cure “ they said sadly, but that there is a one-shot vaccine for about $2 million called Zolgensma. But you have only a few more months to inject.
Oh my God … did we hear that right? Is this even possible? All of our assets were worth a penny.

The sky of our lives became gloomy and we had no hope until helping hands from all over the world reached out to us .”Enough of the grief, enough to sit and watch your baby melt away. Try to save Hirad’s life like all SMA families in the world .We are with you”. These were messages we received from people. We are going to do everything to help and light every star that is extinguished from the sky of your life. This opportunity may not come to us again to be able to save the life of an innocent child. We will not miss this opportunity and we will stand by you. Do not give up and stand up, we also hold your hands until Hirad recovers and gets up from the ground until he can play like all children and be happy.

My beautiful Hirad, my good child .Your led shoes, your beautiful grey trainers with orange stripes, that little cute boots all are left unused in your closet . It was not possible for you to take your first steps in time and Baba Hamed and I could not hold your hand to teach you how to walk. But I am not disappointed anymore. A world of kind people is by our side I believe that you will be walking happily very soon .