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Zahra2018-11-14T21:26:22+00:00

Intro.

FIGHTING for LIFE

Ask moments to walk a bit more slowly
I’m afraid to stay behind
My breath is not able to run

Zahra, a 6 years  old girl, has been diagnosed with a rare disease called SMA (Spinal Muscular Atrophy), which is a terminal, degenerative disease, that takes away a child’s ability to walk, stand, sit, eat, breathe, and even swallow. A new medication, SPINRAZA, can not only stop the disease, but can restore previous degeneration. Unfortunately, Spinraza is VERY expensive, costing $750,000 USD! Without Spinraza Zahra will die. It is imperative that we raise funds immediately in order to save her life. We are so grateful for your support! You are literally saving Zahra’s life.

Story
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Story.

a bit of her hardships.

Zahra Dehghanipour, a little Iranian six years old girl is suffering from SMA disease. Symptoms of her disease appeared at 8th-month of her life. The movements of her hands and feet were reduced, the ability to sit and hold her neck upright disappeared and major power of movement was taken from her little by little . After referring to the neurology specialists  and performing a genetic test, we noticed Zahra’s disease. Searching for cure, the only response we received from doctors that was the lack of treatment of this disease and  progressive weakness of the muscles,  which slowly involves the muscles of the hands and feet, as well as the respiratory muscles and eventually the entire muscles of body will be involved and destroyed. The only way forward was to use boosting medicines and occupational therapy to prevent fast muscle destruction.

At the age of three, we faced a new crisis. A 53-degrees deviation in her spine column which was extremely dangerous. Because this deviation causes pressure on the Zahra’s respiratory system and causes more respiratory problems, including shortness of breath and cease lung growth. Also due to the nature of SMA disease and the weakness of the respiratory muscles, surgery was not possible for her until total treatment. So we had to use a lumbar brace to prevent the exacerbation of the deviation, the belt that Zahra should wear when her eyes open every day and endure the pressure of that in her body until she cloud sleep.

About a year ago, a spark of hope lightened our home space, that was the news of the discovery of a drug called Spinraza for curing SMA disease, which was something we had been waiting for years. Zahra could survive by injection of this drug and even recover her ability to move. But this drug costs 750,000 USD!!! How can we provide such a huge money?

As the parents of Zahra, we extend our hands to each one of you beloved ones. May be 50$ can not effect your life seriously, but donating this money can bring Zahra’s life back, it’s the matter of life. Together we can confirm that borders do not stop humanity. Help Zahra see more days with her loving parents. Do not let Zahra and her parents struggle alone; every dollar counts! Please donate and invite family and friends to this fundraising campaign. Inviting just a hand full of friends will make a huge impact.It is truly heartbreaking watching this baby girl suffer from this cruel disease, but we have hope that together we can save her life!

Feeling
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Heart-to-Heart

little Zahra’s feeling

When I opened my eyes, everyone was happy,They was looking kindly in my eyes and trying to make me laugh. At that time I was so happy to be born. For a few months everything was fine, but in one day every thing changed.  My parents, who had happy faces until that day, were full of grief. I had no idea of this behavior change. They was trying to show themselves happy as before , but I could see sorrow in depth of their eyes.

A few months passed. I saw every child can walk but I couldn’t even move my hand very well. We went to the doctor three times a week to practice. But I still couldn’t move, even when I was sleeping I couldn’t move to the sides. I just discovered the cause of the sad eyes of my mother and father. I was different with other children. I couldn’t fours walk, stand, walk, clap my hands, sit easily, Etc.  I slowly felt that the color of the world had changed, and it was not like the first days of my experience. Since the age of three my condition has worsened. They said I should wear a belt because of my spinal deviation and I have to bear the belt until night. My body is full of sweat, I can not have even the same low motion. Sometimes I fall when I’m sitting. When I get cold, it takes months to be fine.

Now breathing become more harder for me. My hardships are increasing day by day. Sometimes, when I get my throat, I hide my tears in my eyes and try to pretend that everything is normal. Sometimes I try to speak funny so my parents do not feel sad. I know they are doing their best to cure me. And somewhere deep inside my heart, i wish i can be healthy just like my friends. Is it possible?

A heart-to-heart by Zahra’s mother.

Mrs. Zarei

Spinraza
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SMA and Cure

about disease and drug

Spinal muscular atrophy (SMA) is a rare neuromuscular disorder characterised by loss of motor neurons and progressive muscle wasting, often leading to early death.
The disorder is caused by a genetic defect in the SMN1 gene, which encodes SMN, a protein widely expressed in all eukaryotic cells (that is, cells with nuclei, including human cells) and necessary for survival of motor neurons. Lower levels of the protein results in loss of function of neuronal cells in the anterior horn of the spinal cord and subsequent system-wide atrophy of skeletal muscles.
There are attempts around the world to find a reliable cure for this devastating disease. Biogen’s Spinraza (Nusinersen) is the only available drug in the market for SMA (with FDA approval in late 2016) and unfortunately it is a very expensive treatment (750,000 USD for a full-year treatment). This is far beyond what Zahra’s family can afford, yet they are desperately looking for help so that they may save Zahra’s life before it is too late. 
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Please sign this petition to support Zahra to get a discount from Biogen company for her medicine
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Here you can join to Save Zahra campaign in social networks

Facebook page
TL Channel
Telegram Group
Instagram Page

Frequently Asked Questions

Unfortunately, the company does not sell the pack of ampules separately. Zahra must be admitted to a hospital (outside Iran) in a country where the medication is approved and has passed regulations.

Individuals in this campaign have tried to contact celebrities. We always appreciate when you take the initiative and contact celebrities to donate and/or spread the word.

A. You can proceed in following processes  to put pressure in Biogen :

  1. Please sign the bellow petition to help Zahra and all other kids needing SMA: change.org/zahra
  2. Please go to Biogen’s Facebook page and leave a comment on this post? You could say:”I am one of the 221,000 individuals who has signed Zahra Dehghanipour’s petition, a 6-year-old child diagnosed with SMA. Without SPINRAZA, Zahra will die. Please do the right thing and provide her with compassionate use of SPINRAZA.”

    Let’s flood their Facebook page with comments.

  3. Please send an email to Public.affairs@biogen.com and ask them to help Zahra. You could say:”I am one of the 167,000 individuals who has signed a petition on Change.org to save Zahra Dehghanipour, a 6-year-old child diagnosed with SMA. Without SPINRAZA, Zahra will die. Please do the right thing and provide her with compassionate use of SPINRAZA.”

There is a telegram page and account number for people inside Iran.

Telegram : @SaveZahraD

Instagram: @SaveZahraD

The majority of clinical trials have an age limit that Zahra does not meet. We have already contacted them with no success. For drugs other than Spinraza, either the drug is not available to market yet or there is some limiting factor that deems Zahra is unqualified in the clinical trial.

The medication for SMA, Spinraza, is the most expensive medication of the century and there is only one company providing it. We are in contact with the company to negotiate a discount, if possible.

Not at the moment. The ministry of health in Iran has not approved the medication and the company has no contract with Iran. The medication requires a very intricate method of implementation in a hospital recognized by the company and allowed to use the drug by the government.

Spinraza has been just recently been released for word-wide use and there have been several cases with very promising outcomes. If you are interested in the outcome, please search YouTube for Spinraza results and success stories. We hope with your help, Zahra will be another case of success.

Medical Documents

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GET IN TOUCH

Contact.

For more information you can directly speak to Zahra’s family.
You can fill following form or either  call on +989126672641 or send messages on Whatsapp  or Telegram and ask your questions in English, Persian, Turkish and Azerbaijani.
You  also can get in touch with Zahra’s father, Mr. DehghaniPour in his Facebook or his Telegram account.

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Zahra’s father FB
Campaign Manager