Help Sofia

Anastasiya Darbinyan's page

Member

$175 by 4 people

Anastasiya Darbinyan

Total

$2,310

$1,960,000

HelpSofia

Team Members

Anastasiya

$175 / 4 donors

Andrey

$500 / 4 donors

Aleksei

$125 / 3 donors

Anastasiya's Story

I am Anastasia Darbinyan, the mother of three daughters – Elina, Milla and Sofia. My youngest daughter Sofia has been diagnosed with a rare genetic disease – spinal muscular atrophy. This disease gradually takes away the ability to move, breathe, swallow, the heart to beat, and finally, leads to death. Moreover, this is a very rapidly progressing disease, and kids with such a diagnoses are classified as disabled.

Currently Sofia is 4 months old but she is not able to hold her head and turn her body. She is falling behind in her motor development – level of 0-1 month age. However, psychologically she is absolutely fine – she smiles, laughs and responds to interactions.

There are two ways of treatment that exist in the world – lifelong treatment and a one-time treatment. Both are extremely expensive and we cannot afford it. We have tried all possible options and exhausted resources and opportunities that we had.

There is one medicine that is available in Russia – SPINRAZA (Nusinersen), a drug that has to be taken throughout ones life. Unfortunately, our insurance does not cover it. Moreover, we are eligible for getting help from the Russian government that is supposed to provide us with this drug but due to its limited budget they are stretching the time by complicating the process with bureaucracy. While we are fighting for our rights to get the treatment our daughter loses motor neurons and her muscles get atrophy. Thus there are big chances that we will not be getting the treatment regularly and in time, so we lost hope and are fearful to lose our daughter.

Thanks to gene engineering there is one more drug that can help, which has been developed recently and registered in the USA and Europe - ZOLGENSMA. This injection is given only once and, for the full success and recovery, should be given until the age of 6 month old. In this case there are chances for recovering of motor development and getting back full ability to move and live a regular life, according to the tests and studies.

We have created a fund to collect money for Zolgensma, and we are asking for your help. Please help us to save our daughter’s life.

Please visit our resources for more information:

Website: 
https://sofiadarbinyan.ru/en/
Instagram:
https://www.instagram.com/helpsofiadarbinyan/
Email:
[email protected]
Cell phone: +7 923 235 04 09

HelpSofia's Story

Dear friends,

I am a close friend to Anastasia and Vladimir's family. They live in Russia and have three beautiful daughters : Elina, Mila and Sofia.

Sofia has just turned 4 months and two weeks ago she was diagnosed with SMA 1 level : Spinal muscle atrophy,which is a rare, severe and rapidly progressing genetic disease. As for now there is only one pharmacy product in the world, which can save Sofia's life and it is called "ZOLGENSMA" - is a swiss product. The injection is administered intravenously once in a lifetime and it acts at the gene level by replacing the mutating gene with a functionally one and if it is done before the kid turns 6 months old then the child can have a normal life. This injection is the most expensive pharmacy product in the world and costs $2.125 mln.  How dreadful is to realize that you cannot save your child because you do not have enough money for treatment. The family is doing everything they can. They do a lot of supporting therapy and in the meantime try to raise a necessary amount. Each of us can help and give Sofia a chance! A little help by everyone and reposting our message in your social network will make a difference! Please come and check Sofia's story on instagram! https://www.instagram.com/helpsofiadarbinyan/

Supporters

Anastasiya Darbinyan received a new donation from Friends

3 months ago

$50

Hope she will get better soon!

Dinara Seyfulmulyukova made a donation

3 months ago

$30

Tatiana Ramsey made a donation

3 months ago

$50

Anonymous made a donation

3 months ago

Anna Oleynik made a donation

3 months ago

$100

Rex, Stu, Jack & Jim made a donation

3 months ago

$50

our love to you ❌

Anastasiya Darbinyan received a new donation from Людмила Р

3 months ago

$25

София, будь здорова!❤️

Anonymous made a donation

3 months ago

Wishing Sofia a full recovery!

Anonymous made a donation

3 months ago

Wishing sweet Sofia a full recovery 💗

Aleksei Saraev received a new donation from Anonymous

3 months ago

$25

Поправляйся малышка

Katia made a donation

4 months ago

$100

Anna Oleynik made a donation

4 months ago

$30

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