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Save Roham (An SMA type 1 patient)

Dear All

I am Amir, father of an SMA (Spinal Muscular Atrophy) type-1 son named Roham. He was born in Jun 2017, but when he was 2 months old, his symptoms started and we received his genetic test results around 4 month old, stating he is affected.

There are attempts going on around the world to find a reliable cure for this unfortunate disease, and in early 2017, Biogen's Spinraza (Nusinersen) got FDA approval. Unfortunately, Spinraza is so expensive (750,000 USD approx equal to 750,000 Swiss Frank [CHF] for the first two years).

At this point, we are trying to enroll Roham in a clinal study by Roche company (Firefish) as the only availabe option, but we are not sure about his enrollment yet. [Update: unfortunately, we realized because of Roham invasive breathing aid ( intubation and tracheostomy) he can not enroll to study and our hope vanished.]
Roham is trying hard for 1.5 month in ICU and although his doctor at the I-ICU predicted he would not make it, he has so far managed to open his eyes and enjoy the beauty of life once more, to everyone’s surprise.

We cannot stop struggling as long as Roham keeps fighting this disease. We cannot just sit and watch him die against his will and endeavor. He really deserves to be cured and given an opportunity to see the beauty of life.

Sincelery yours,
S.A. Hosseini

This campain is created by Roham's cousin (Seyedvahid Hosseini from Switzerland), since he and his familay are living in Iran with no access to international financial system. The funding from this campaign will be spend to buy the drug (Spinzara) for Roham treatment. Unfortunately, this new treatment for SMA1 doesn’t cover by any insurance in Iran and not yet approved by Iranian food and drug administration. Most likely Roham needs to travel to European countries to get the treatment where the money that coming from this campaign and other fundraising should spend for his treatment. Therefore, I will pay directly for his treatment here to buy drug or get the treatment if we could get sufficient funding.
In case that Roham doesn’t survive from this disease, we plan to donate this money to other patient like Roham with treatable rare disease like as SMA.

Best regards,
Seyedvahid Hosseini



Organizer

SeyedVahid Hosseini
Organizer
Watt

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