Help Baby Kirill
Donation protected
Hello! My name is Wyn Davis from London and I am helping to raise money for a beautiful Ukraine baby with a very rare and difficult illness. Here is baby Kirill's instagram
https://www.instagram.com/kirill_win_sma/
https://instagram.com/kondrashev_kirill?igshid=18qamcwufzp33
Here is the mother's words below:
'My name is Dariya Kondrasheva. And I am asking you for help.
My son, Kirill Kondrashev, was born 15.11.2019 in Konstantinovka, Donetsk region, Ukraine.
When Kirill was 1.5 months old, we noticed that his legs weren't moving as well as expected for his age.
We saw multiple neurologists in our town as well as in Kramatorsk and in Kiev. And we've been told by doctors to have 15 massage sessions for our son and medications prescribed were Tserakson, Agvantar, Nucleo and injections like Aktovegin and Tserebrolesin.
At the same time we kept doing blood works and urinalysis for different bacterias, viruses but the tests were coming out negative.
After all those treatments we didn't see much result, so we had to see genetics specialists and do another blood test for genetics related diseases.
The result of a blood test was Spinal Muscle Atrophy Type 1 (also called Werdnig Hoffman disease). It is a rare neuro muscular disease, which is inherited genetically. Such disease interferes with movements and dent allow to crawl, walk, move extremities, neck and head as well as breathing and swallowing. This disease usually has a low survival rate and children do not survive for more than 2 years old without treatment.
At this time, Ukraine does not have medications that would help our child. However, there is a medication called Nusinersen (brand name Spinzara), which patients take throughout lifetime but break down into many treatments. During the first year, it is required to make 6 injections, which one injection in Turkish clinic is $150,000.
Theres is also gene therapy "Zolgensma" where only one injection is needed for curing this disease, but the price exceeds $2,000,000. In addition to that, another blood work will be required as well as hospitalization in the United States.
At this time Respiratory Ventilation is required, which is worth USD $17,000 ; Expectorant treatment worth $4,100 & rehabilitation.
Those are very necessary treatments for our baby and we won't be able to afford without your help. I will be grateful to each and every one of you for any help, either anyone has any information for us or can support us financially.'
https://www.instagram.com/kirill_win_sma/
https://instagram.com/kondrashev_kirill?igshid=18qamcwufzp33
Here is the mother's words below:
'My name is Dariya Kondrasheva. And I am asking you for help.
My son, Kirill Kondrashev, was born 15.11.2019 in Konstantinovka, Donetsk region, Ukraine.
When Kirill was 1.5 months old, we noticed that his legs weren't moving as well as expected for his age.
We saw multiple neurologists in our town as well as in Kramatorsk and in Kiev. And we've been told by doctors to have 15 massage sessions for our son and medications prescribed were Tserakson, Agvantar, Nucleo and injections like Aktovegin and Tserebrolesin.
At the same time we kept doing blood works and urinalysis for different bacterias, viruses but the tests were coming out negative.
After all those treatments we didn't see much result, so we had to see genetics specialists and do another blood test for genetics related diseases.
The result of a blood test was Spinal Muscle Atrophy Type 1 (also called Werdnig Hoffman disease). It is a rare neuro muscular disease, which is inherited genetically. Such disease interferes with movements and dent allow to crawl, walk, move extremities, neck and head as well as breathing and swallowing. This disease usually has a low survival rate and children do not survive for more than 2 years old without treatment.
At this time, Ukraine does not have medications that would help our child. However, there is a medication called Nusinersen (brand name Spinzara), which patients take throughout lifetime but break down into many treatments. During the first year, it is required to make 6 injections, which one injection in Turkish clinic is $150,000.
Theres is also gene therapy "Zolgensma" where only one injection is needed for curing this disease, but the price exceeds $2,000,000. In addition to that, another blood work will be required as well as hospitalization in the United States.
At this time Respiratory Ventilation is required, which is worth USD $17,000 ; Expectorant treatment worth $4,100 & rehabilitation.
Those are very necessary treatments for our baby and we won't be able to afford without your help. I will be grateful to each and every one of you for any help, either anyone has any information for us or can support us financially.'
Organizer
Wyn Nathan Davis
Organizer
England