Help Kiana Now!

Kiana, an 18-month old baby girl has been diagnosed with a rare disease called SMA (Spinal Muscular Atrophy) type 2, 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 Kiana will die. It is imperative that we raise funds immediately in order to save Kiana's life. We are so grateful for your support! You are literally saving Kiana's life.

Kiana was born in January of 2017 in a rural area of Khatam in Yazd province, Iran. She was acting normal in every way until she was 9 months old. Her parents noticed she was gradually losing her strength. After undergoing various tests, Kiana was diagnosed with SMA type II. SMA is a rare genetic disease that impairs the control of muscle movements and if not treated in time will impact muscles used for breathing and swallowing which will ultimately lead to death.

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 Kiana's family can afford, yet they are desperately looking for help so that they may save Kiana's life before it is too late.

Kiana is a fighter. She currently travels to Yazd city (150 miles away from her home) for occupational therapy twice a week and is now able to sit for a few minutes. However, this is as far as she can progress and if she does not receive Spinraza it is just a matter of time before this disease defeats Kiana.

Kiana's parents will never stop fighting to save their precious daughter's life. We cannot just sit and watch her struggle to survive. Kiana deserves to be cured and given an opportunity to experience the beauty of life.

Together we can confirm that borders do not stop humanity. Help Kiana see more days with her loving parents. Do not let Kiana 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!

Thank you for your love and support

DONATE

Other Information:

You can sign a petition for Kiana and other kids in the same situation here.

To learn more about Kiana , please visit the following Facebook page which includes documents, medical test results, pictures, videos and posts.click here

Please note that if by any means and as painful as it is to say, beloved Kiana is not able to receive the medication provided by your donations, the money raised will be generously gifted to other children struggling with SMA.

FAQ

How can I get more evidence on this case?

Please refer to evidence provided on Kiana's Facebook page here or Instagram here or telegram here.

Why don’t we start the treatment now? Can’t we buy the first couple of doses/injections?

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

Have you considered talking to Iranian/non-Iranian celebrities?

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

How will Kiana receive the medication if she is in Iran?

Is there a way to make our voice heard by the company to facilitate the treatment process

A hospital and a neurologist had been contacted and volunteers are actively seeking hospital admission outside Iran where this specific treatment is possible. The fund will transfer directly to the hospital to start the treatment. Please sign the bellow petition to help Kiana and all other kids needing SMA:

https://www.change.org/p/biogen-idec-dear-biogen-company-please-gift-kiana-compassionate-use-of-spinraza-she-deserves-treatment

How will Kiana receive the medication if she is in Iran?

Is there a way to make our voice heard by the company to facilitate the treatment process?

Please sign the petition to help Kiana and all other kids needing SMA here.

Why aren’t you joining clinical trials?

The majority of clinical trials have an age limit that Kiana 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 Kiana is unqualified in the clinical trial.

Why is such a high amount of money needed?

The medication for SMA, Spinraza, is the most expensive medication of the century and there is only one company providing it. The company had been contacted to negotiate for a discount, if possible.

Can they administer the injections in Iran?

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.

Has this medication, Spinraza, been effective so far?

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, Kiana will be another case of success.