Save Adel Motenko from SMA
Donation protected
Save Adel from SMA #saveadel
**UPD new invoice from San Antonio hospital is for $1 870 000 USD
This fundraising has been established to SAVE ADEL by collecting for an injection of Zolgensma.
The cost of this treatment is $3,055,000 CAD ($2,350,000USD) including outpatient Protocol is $120,000USD. The family was able to gather for outpatient protocol with the help of kind hearts of people from all over the world, now we ask Gofundme community to help us to raise for injection.
We are turning to the world because this one-time treatment needs to be done as soon as possible.
Please meet this sweet baby Adelina Motenko who was born on July 3, 2020, in Kakhovka, Ukraine. Adel means the whole world to her parents. She became the newborn joy and immediately absorbed into this loving family after 12 long years of waiting.
However, the joy of life for Adel in 3 month became a nightmare: she received a positive genetic blood test results and a Geneticist confirmed the diagnosis of SMA type 1. The doctor stated that there is no possible treatment in Ukraine and sent home to die....
Most infants with SMA type 1 do not survive past age 2
Adel’s parents immediately began doing everything possible to fight for their daughter’s life and her future.
With no chances of getting at least some kind of treatment in Ukraine, Adel’s family made the hardest decision of their life. Leaving everything they decided to move to neighboring Poland to save daughter. With tears in their eyes and completely devastated, they went to a foreign country for the sake of salvation.
In Poland Adel has undergoing treatment Spinraza to slow down the degeneration in all muscles of her body and everyday life turned into an endless sequence of painful rehabilitation sessions. This little girl is a team player, she is suffering through these endless painful procedures like a hero. But the treatment Spinraza it is a temporary supportive therapy, who won't cure this girl. And unfortunately the time is limited.
Adel is a child who loves smiling, she is smart and curious. This child may learn about the world, science, and languages in future. BUT Adel may forever lose her ability to move, breathe and eat on her own without the help of special equipment.
We believe if each of us considers helping Adel and raising awareness of her fight for life then each of us can say:” I helped to SAVE A BABY’S LIFE”. #saveadel
Why is it so critical and needing of immediate attention?
SMA Type 1 can quickly lead to a need for mobility, breathing and eating support. With the Zolgensma treatment Adel could be cured and achieve childhood milestones leading to a bright and fulfilling future.
Zolgensma is given through an intravenous (IV) infusion that takes about an hour and can SAVE ADEL’s LIFE and she can live a long, full and happy life.
To everyone who believes in happy endings…
We need all the help we can get. We are asking you, NOT ONLY DONATE towards this cause but also come together TO SHARE THIS STORY with your relatives, friends, colleagues, and neighbours on different social media providers or in any other way possible.
Follow Adel's journey on Instagram @save_adel_world
#saveadel #sma #spinalmuscularatrophy #zolgensma
Document from Boston Children's Hospital, Adel's documents indicating her diagnosis and test can be found here : https://saveadel.com/p/5261df/
**UPD new invoice from San Antonio hospital is for $1 870 000 USD
This fundraising has been established to SAVE ADEL by collecting for an injection of Zolgensma.
The cost of this treatment is $3,055,000 CAD ($2,350,000USD) including outpatient Protocol is $120,000USD. The family was able to gather for outpatient protocol with the help of kind hearts of people from all over the world, now we ask Gofundme community to help us to raise for injection.
We are turning to the world because this one-time treatment needs to be done as soon as possible.
Please meet this sweet baby Adelina Motenko who was born on July 3, 2020, in Kakhovka, Ukraine. Adel means the whole world to her parents. She became the newborn joy and immediately absorbed into this loving family after 12 long years of waiting.
However, the joy of life for Adel in 3 month became a nightmare: she received a positive genetic blood test results and a Geneticist confirmed the diagnosis of SMA type 1. The doctor stated that there is no possible treatment in Ukraine and sent home to die....
Most infants with SMA type 1 do not survive past age 2
Adel’s parents immediately began doing everything possible to fight for their daughter’s life and her future.
With no chances of getting at least some kind of treatment in Ukraine, Adel’s family made the hardest decision of their life. Leaving everything they decided to move to neighboring Poland to save daughter. With tears in their eyes and completely devastated, they went to a foreign country for the sake of salvation.
In Poland Adel has undergoing treatment Spinraza to slow down the degeneration in all muscles of her body and everyday life turned into an endless sequence of painful rehabilitation sessions. This little girl is a team player, she is suffering through these endless painful procedures like a hero. But the treatment Spinraza it is a temporary supportive therapy, who won't cure this girl. And unfortunately the time is limited.
Adel is a child who loves smiling, she is smart and curious. This child may learn about the world, science, and languages in future. BUT Adel may forever lose her ability to move, breathe and eat on her own without the help of special equipment. We believe if each of us considers helping Adel and raising awareness of her fight for life then each of us can say:” I helped to SAVE A BABY’S LIFE”. #saveadel
Why is it so critical and needing of immediate attention?
SMA Type 1 can quickly lead to a need for mobility, breathing and eating support. With the Zolgensma treatment Adel could be cured and achieve childhood milestones leading to a bright and fulfilling future.
Zolgensma is given through an intravenous (IV) infusion that takes about an hour and can SAVE ADEL’s LIFE and she can live a long, full and happy life.
To everyone who believes in happy endings…
We need all the help we can get. We are asking you, NOT ONLY DONATE towards this cause but also come together TO SHARE THIS STORY with your relatives, friends, colleagues, and neighbours on different social media providers or in any other way possible.
Follow Adel's journey on Instagram @save_adel_world
#saveadel #sma #spinalmuscularatrophy #zolgensma
Document from Boston Children's Hospital, Adel's documents indicating her diagnosis and test can be found here : https://saveadel.com/p/5261df/
Co-organizers (2)
Andrii Motenko
Organizer
Georgetown, ON
Maryna M
Co-organizer