Please Help to Save Misha - Time is Running Out!
Donation protected
https://www.instagram.com/mishkawinsma/
(* $8.8k raised on GoFundMe out of $500k international goal*
*Altogether raised $1,107 k of 2.3 million*)
Hello EVERYONE. We are Misha Bakhtins’ parents Iana (Yana) Gafinetc and Dmitrii Bakhtin from Ekaterinburg. Misha (Mikhail Bakhtin) was born with devastating genetic condition SMA Type 1 (Spinal Muscular Atrophy). SMA is a disease that steals from babies the ability to talk, eat, sit up and even breathe.
We launched this GoFundMe page in a desperate attempt to save Misha’s life and give him a chance for a healthy and happy future. We URGENTLY need your help in raising $ 2.3 million for the priciest drug in the world, Zolgensma. Without this one-time dose genetic treatment, there is no hope for Misha … Please be ONE of these people who SAVES Misha’s life by giving.
https://www.forbes.com/sites/joshuacohen/2019/06/05/at-over-2-million-zolgensma-is-the-worlds-most-expensive-therapy-yet-relatively-cost-effective/#212735b145f5
We know that $2.3 million sounds unreal, but we are less than one month into our fundraising campaign, and we raised more than $500,000! And the donations from incredibly kind people like all of you continue to flow in. THANK YOU!!
Misha’s story:
We were so thrilled to find out that Iana (Yana) was pregnant and so excited to hear at 12 weeks screening that we were expecting a baby boy. Pregnancy was easy without any problems.
Misha was born on July 22, 2020 with no complications. We were so happy to bring him home and start a new page of our life. For the first two weeks, Misha did not show any signs of this devastating condition. He was eating and sleeping normally. We were so happy! We could not even image that our long-awaited baby has SMA Type1. However, after two weeks we noticed unusual arm movements and decided to show Misha to his pediatrician. Misha was quite weak, and the doctor prescribed some test. The ultrasound revealed that he had a residual asphyxia, yet the overall results were good.
On Aug 14th, 2020 we had an appointment with our neurologist where we first time heard presumptive diagnosis - Spinal Muscular Atrophy (SMA) Type 1.
On Sep 2nd, 2020, Misha’s condition was officially confirmed - SMA Type 1, a disease that takes away babies’ ability to talk, eat, sit up and finally breathe.
BUT THERE IS HOPE!
Our son needs genetic treatment with drug called Zolgensma, the most expensive drug in the World. The cost of Misha’s life is $2.3 million. Misha’s time is quickly running out. Even though Misha is only two months old now, it is critical begin treatment as early as possible in order to stop irreversible motor neuron loss and make the achievement of major motor milestones such as crawling, sitting and walking and even breathing. Medical studies show the tremendous lifechanging impact Zolgensma can have on children with SMA Type 1.
PLEASE keep spreading Misha’s story. We will be FOREVER GRATEFUL for YOUR HELP in saving Misha.
Please share, share, share! Our fight for Misha’s life continues!
Social media:
https://instagram.com/mishkawinsma?igshid=17zeg4y0cz295
https://www.facebook.com/profile.php?id=100054667615509
https://taplink.cc/mishkawinsma
Disclaimer:
The campaign has been created at the request of Yana and Dmitrii Bakhtin in order to save their son’s life Mikhail Bakhtin.
All funds will be spent to pay for gene therapy with drug Zolgensma, Novartis.
(* $8.8k raised on GoFundMe out of $500k international goal*
*Altogether raised $1,107 k of 2.3 million*)
Hello EVERYONE. We are Misha Bakhtins’ parents Iana (Yana) Gafinetc and Dmitrii Bakhtin from Ekaterinburg. Misha (Mikhail Bakhtin) was born with devastating genetic condition SMA Type 1 (Spinal Muscular Atrophy). SMA is a disease that steals from babies the ability to talk, eat, sit up and even breathe.
We launched this GoFundMe page in a desperate attempt to save Misha’s life and give him a chance for a healthy and happy future. We URGENTLY need your help in raising $ 2.3 million for the priciest drug in the world, Zolgensma. Without this one-time dose genetic treatment, there is no hope for Misha … Please be ONE of these people who SAVES Misha’s life by giving.
https://www.forbes.com/sites/joshuacohen/2019/06/05/at-over-2-million-zolgensma-is-the-worlds-most-expensive-therapy-yet-relatively-cost-effective/#212735b145f5
We know that $2.3 million sounds unreal, but we are less than one month into our fundraising campaign, and we raised more than $500,000! And the donations from incredibly kind people like all of you continue to flow in. THANK YOU!!
Misha’s story:
We were so thrilled to find out that Iana (Yana) was pregnant and so excited to hear at 12 weeks screening that we were expecting a baby boy. Pregnancy was easy without any problems.
Misha was born on July 22, 2020 with no complications. We were so happy to bring him home and start a new page of our life. For the first two weeks, Misha did not show any signs of this devastating condition. He was eating and sleeping normally. We were so happy! We could not even image that our long-awaited baby has SMA Type1. However, after two weeks we noticed unusual arm movements and decided to show Misha to his pediatrician. Misha was quite weak, and the doctor prescribed some test. The ultrasound revealed that he had a residual asphyxia, yet the overall results were good.
On Aug 14th, 2020 we had an appointment with our neurologist where we first time heard presumptive diagnosis - Spinal Muscular Atrophy (SMA) Type 1.
On Sep 2nd, 2020, Misha’s condition was officially confirmed - SMA Type 1, a disease that takes away babies’ ability to talk, eat, sit up and finally breathe.
BUT THERE IS HOPE!
Our son needs genetic treatment with drug called Zolgensma, the most expensive drug in the World. The cost of Misha’s life is $2.3 million. Misha’s time is quickly running out. Even though Misha is only two months old now, it is critical begin treatment as early as possible in order to stop irreversible motor neuron loss and make the achievement of major motor milestones such as crawling, sitting and walking and even breathing. Medical studies show the tremendous lifechanging impact Zolgensma can have on children with SMA Type 1.
PLEASE keep spreading Misha’s story. We will be FOREVER GRATEFUL for YOUR HELP in saving Misha.
Please share, share, share! Our fight for Misha’s life continues!
Social media:
https://instagram.com/mishkawinsma?igshid=17zeg4y0cz295
https://www.facebook.com/profile.php?id=100054667615509
https://taplink.cc/mishkawinsma
Disclaimer:
The campaign has been created at the request of Yana and Dmitrii Bakhtin in order to save their son’s life Mikhail Bakhtin.
All funds will be spent to pay for gene therapy with drug Zolgensma, Novartis.
Organizer
Olga Heben
Organizer
Warminster Township, PA
