Save Farida, make the world better

My daughter, Farida, was diagnosed with SMA (Spinal Muscular Atrophy) in October of 2017. It causes deterioration of the motor nerve cells in the patient's spinal cord. This genetic disease takes away the ability to walk, eat, or even breathe. It is the number one cause of death for infants and was incurable for many years. The FDA finally approved one drug, Spinraza, in December of 2016. Farida early in her diagnosis. Our biggest problem was that we lived in Egypt and the drug is only available in The United States. Then, Spinraza costs $1,500,000 for the first year of treatment (excluding hospital fees)! SMA patients need lifetime treatment. So you can imagine how helpless and vulnerable we felt (and continuously feel). No parent should ever have to face this. We reached out and after several months of hanging on by a thread, Farida's voice was heard. She received national attention and made the news in Egypt. This boosted our pleas for help from the government and reached millions. Yet, the MOH had very little to offer being that Farida was one in a million of SMA cases in Egypt. Farida on the news with the popular Amr Adeeb. Shortly afterward, Farida was sponsored by a Saudi Arabian businessman. With his assist, she was accepted into Boston Children's Hospital in Massachusetts. Our family of four, (mom, dad, and five-year-old brother) were all issued medical visas and left for USA. This was last November. Shortly after she arrived to the US he stopped sponsoring her leaving her to an uncertain fate. Today farida is2 years l, and there is way more expenses than just the medicen such as our accommodation at the hospital, respiratory machines, and more. He has gone even further than we could have ever imagined, and for that, we will remain forever grateful. After the second dose of Spinraza. We have exhausted all our financial resources and personal savings from home. We are in debt. We need an average of $150,000  to get farida all the equipments she need. Help us save our daughters life and take her back home. We have came so far to fail her now. Farida fighting for her life now more than ever, now that her sponsor stopped supporting her.

Donations

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  • Anonymous 
    • $100 
    • 24 mos
  • Ayman Nesseem  
    • $50 
    • 25 mos
  • Nadir Shyotis 
    • $200 
    • 25 mos
  • Sohaila Saleh 
    • $50 
    • 28 mos
  • Yousef Hani 
    • $150 
    • 28 mos
See all

Organizer

Sara Ghanem 
Organizer
Boston, MA
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