Let's help - Anika's fight for Life
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https://www.facebook.com/notes/za-anikin-dug-i-lep-%C5%BEivot/anikas-story-faqs-about-sma-therapy/10224710303123770/
I would like you to meet Anika, a little girl from Serbia, real fighter and daughter of my friends Ivanka and Goran. She loves music and puppies, and she radiates love. Unfortunately, Anika was born with the most serious form of spinal muscular atrophy (SMA1). In her case, the illness principally affects smaller muscle groups which causes her serious difficulties with basic physiological functions such as breathing, coughing or swallowing. As a consequence, Anika’s life is in constant danger.
This is why we need to help!
The only chance for her to be stable, to breathe and to swallow independently is a gene treatment called Zolgensma. The cost of this treatment is 2.1 million euro, an amount hard to comprehend for most of us but one that becomes possible to achieve if many of us act together!
I am kindly asking you to help Anika in any way that you can, by donating (even a couple of dollars makes a difference!) or by sharing this call. Together, we can create a chance for Anika to live and have a beautiful childhood.
Please, let’s show up for her!
Thank you kindly!
<3
Here is Anika’s story, told by her mum:
My only child, my biggest love, and the meaning of my life is slowly losing her strength to live. Unfortunately, as the time goes by, Anika’s breathing and swallowing is getting weaker. We need more machines and more help to keep her alive. Every day is a fight. A fight for air in her lungs, a fight for every movement of her body, a fight for a smile, for joy, a fight to make every moment with her special, because we don’t know what tomorrow holds. But, there is hope! In May this year, a gene therapy Zolgensma has been approved in Europe that could help Anika breathe independently and regain her strength to speak and eat.
Anika was born as a healthy, strong baby, with strong reflexes and a grade 10. It couldn’t have been any better. On a regular medical checkup, 5 weeks after her birth, her doctor tested her reflexes and we have noticed that Anika’s reactions were not as strong before. Doctor told us that Anika is a lazy baby and that we shouldn’t worry about it. However, we knew that she was strong after her birth, so strong that nurses complimented her about it. Therefore, couple of days later we decided to go to the hospital and have a more thorough check. After a week of diagnostic test, such as MRI, brain scan, different metabolic and genetic analyses, Anika received a diagnosis that we have never heard about before. A rare, progressive and terminal neuromuscular desase that affects 1 in 10.000 babies. Its name is spinal muscular atrophy, SMA type 1.
Most of the babies with SMA 1 do not live until their first birthday. Almost none until their second. SMA is a rare disease in which a body lacks a gene that produces a protein necessary for activating motor neurons. When they do not receive the protein, these neurons that are in charge of transmitting impulses to the muscles, die out. Consequently, without the impulse from the neurons, the muscles remain passive and collapse. The atrophy starts with large muscle groups, arms, legs and neck. After some time, it progresses to smaller muscle groups in charge of vital functions of swallowing, breading, or coughing. The death was inevitable, and until recently there was no cure.
But Anika was lucky enough if we could speak of lack among babies that are born with this diagnosis, that she was born at the time when something could be done.
The existing evidence so far supports the efficiency of newly approved gene therapy Zolgensma on the entire body, including the breathing and swallowing muscles that are getting very weak in Anika’s case. Zolgensma is a one-time treatment, that is received through an injection. With that one injection Anika would receive a medicine that could “correct” the gene that produces protein that Anika’s body is missing to stay alive.
We have tried to get this treatment in all the ways we saw possible. We have tried to sign up for randomized controlled trials in earlier phases of the development of Zolgensma, to relocate to a different country, to ask for support of different medical experts, to apply for a lottery organized by the company that produces the treatment but none of it worked. In the meantime, we fought many battles to keep Anika alive, to ease her symptoms, to protect her weak little body because even the most benign infection could be fatal for her. The doors to the treatment remained closed. Every time the door closed, we persisted and we tried to open another one. However, in spite all the efforts we still didn’t manage. Now we will try to do what seem impossible, and fund-raise 2.1 million euro to cover the costs of the Zolgensma treatment. Initially, we thought that this was the least feasible option. Now, it is the only option we still haven’t tried.
We would use the fund raised to obtain Zolgensma and cover medical expenses of three-month long hospital stay.
I am terrified by the thought that I haven’t done everything I could to save my child, one precious and innocent life. This is the feeling that I go to sleep and wake up in the morning with. I wish Anika could get her chance to have a long and happy life. I wish she could have the highest quality of life she could have. I wish she could go from isolation that she lives in due to high risk of not surviving a viral infection. I wish she could spend time with other children, play outdoors and cuddle animals. I wish her lovely smile would come back, the one that is now hidden behind weak face muscles. I wish she could start talking and start asking thousands of questions that I do not know how an answer to. I wish she could try her mum’s pancakes and her dad’s meat specialties. I wish her life could be as rich as much as she enriched ours. Please help us. Please help Anika.
I am sure that in 10 years from now there will be no more children with the symptoms of SMA. The science and the medicine are progressing so fast that soon children with such diagnosis will be able to have a healthy, normal life. Unfortunately, we are not there yet. At this time, when Anika is in need of the treatment, gene therapy is still hardly accessible. Anika deserves a chance to live, as much as all other children do. She deserves a chance. Anika is full of life. She is a fighter that sparks joy regardless all the problems that she faced in her little life. Despite of her weak body, her inner strength amazes everyone she meets. She uses all her strength to bring joy to our lives, to listen to music, and to smile whenever she can.
I have never thought that I could have a baby who is so terribly ill. I have never thought that this fight would become our life. I have imagined that there would always be signs or some evidence in family history that would prepare people for a possibility of such a diagnosis. Now I know that this diagnosis is much less rare than I would have ever thought. This is Anika’s fight but this is also a fight for all other babies with SMA and the babies that might still be born with it. Anika and other children like her, that are currently fighting to receive gene therapy, are paving the road for children that are yet to be born. They are rising awareness about this horrible disease and the necessity of enabling gene therapy to every child in need. The more evidence is for positive effects of the treatment now, the more probably it is that this treatment will become the standard for treating SMA. By supporting Anika in her fight, you will also contribute to the fight for other children with SMA to have easier road to the treatment and easier childhood.
Let’s create future together. For Anika. And for the children who are yet to be born. <3
I would like you to meet Anika, a little girl from Serbia, real fighter and daughter of my friends Ivanka and Goran. She loves music and puppies, and she radiates love. Unfortunately, Anika was born with the most serious form of spinal muscular atrophy (SMA1). In her case, the illness principally affects smaller muscle groups which causes her serious difficulties with basic physiological functions such as breathing, coughing or swallowing. As a consequence, Anika’s life is in constant danger.
This is why we need to help!
The only chance for her to be stable, to breathe and to swallow independently is a gene treatment called Zolgensma. The cost of this treatment is 2.1 million euro, an amount hard to comprehend for most of us but one that becomes possible to achieve if many of us act together!
I am kindly asking you to help Anika in any way that you can, by donating (even a couple of dollars makes a difference!) or by sharing this call. Together, we can create a chance for Anika to live and have a beautiful childhood.
Please, let’s show up for her!
Thank you kindly!
<3
Here is Anika’s story, told by her mum:
My only child, my biggest love, and the meaning of my life is slowly losing her strength to live. Unfortunately, as the time goes by, Anika’s breathing and swallowing is getting weaker. We need more machines and more help to keep her alive. Every day is a fight. A fight for air in her lungs, a fight for every movement of her body, a fight for a smile, for joy, a fight to make every moment with her special, because we don’t know what tomorrow holds. But, there is hope! In May this year, a gene therapy Zolgensma has been approved in Europe that could help Anika breathe independently and regain her strength to speak and eat.
Anika was born as a healthy, strong baby, with strong reflexes and a grade 10. It couldn’t have been any better. On a regular medical checkup, 5 weeks after her birth, her doctor tested her reflexes and we have noticed that Anika’s reactions were not as strong before. Doctor told us that Anika is a lazy baby and that we shouldn’t worry about it. However, we knew that she was strong after her birth, so strong that nurses complimented her about it. Therefore, couple of days later we decided to go to the hospital and have a more thorough check. After a week of diagnostic test, such as MRI, brain scan, different metabolic and genetic analyses, Anika received a diagnosis that we have never heard about before. A rare, progressive and terminal neuromuscular desase that affects 1 in 10.000 babies. Its name is spinal muscular atrophy, SMA type 1.
Most of the babies with SMA 1 do not live until their first birthday. Almost none until their second. SMA is a rare disease in which a body lacks a gene that produces a protein necessary for activating motor neurons. When they do not receive the protein, these neurons that are in charge of transmitting impulses to the muscles, die out. Consequently, without the impulse from the neurons, the muscles remain passive and collapse. The atrophy starts with large muscle groups, arms, legs and neck. After some time, it progresses to smaller muscle groups in charge of vital functions of swallowing, breading, or coughing. The death was inevitable, and until recently there was no cure.
But Anika was lucky enough if we could speak of lack among babies that are born with this diagnosis, that she was born at the time when something could be done.
The existing evidence so far supports the efficiency of newly approved gene therapy Zolgensma on the entire body, including the breathing and swallowing muscles that are getting very weak in Anika’s case. Zolgensma is a one-time treatment, that is received through an injection. With that one injection Anika would receive a medicine that could “correct” the gene that produces protein that Anika’s body is missing to stay alive.
We have tried to get this treatment in all the ways we saw possible. We have tried to sign up for randomized controlled trials in earlier phases of the development of Zolgensma, to relocate to a different country, to ask for support of different medical experts, to apply for a lottery organized by the company that produces the treatment but none of it worked. In the meantime, we fought many battles to keep Anika alive, to ease her symptoms, to protect her weak little body because even the most benign infection could be fatal for her. The doors to the treatment remained closed. Every time the door closed, we persisted and we tried to open another one. However, in spite all the efforts we still didn’t manage. Now we will try to do what seem impossible, and fund-raise 2.1 million euro to cover the costs of the Zolgensma treatment. Initially, we thought that this was the least feasible option. Now, it is the only option we still haven’t tried.
We would use the fund raised to obtain Zolgensma and cover medical expenses of three-month long hospital stay.
I am terrified by the thought that I haven’t done everything I could to save my child, one precious and innocent life. This is the feeling that I go to sleep and wake up in the morning with. I wish Anika could get her chance to have a long and happy life. I wish she could have the highest quality of life she could have. I wish she could go from isolation that she lives in due to high risk of not surviving a viral infection. I wish she could spend time with other children, play outdoors and cuddle animals. I wish her lovely smile would come back, the one that is now hidden behind weak face muscles. I wish she could start talking and start asking thousands of questions that I do not know how an answer to. I wish she could try her mum’s pancakes and her dad’s meat specialties. I wish her life could be as rich as much as she enriched ours. Please help us. Please help Anika.
I am sure that in 10 years from now there will be no more children with the symptoms of SMA. The science and the medicine are progressing so fast that soon children with such diagnosis will be able to have a healthy, normal life. Unfortunately, we are not there yet. At this time, when Anika is in need of the treatment, gene therapy is still hardly accessible. Anika deserves a chance to live, as much as all other children do. She deserves a chance. Anika is full of life. She is a fighter that sparks joy regardless all the problems that she faced in her little life. Despite of her weak body, her inner strength amazes everyone she meets. She uses all her strength to bring joy to our lives, to listen to music, and to smile whenever she can.
I have never thought that I could have a baby who is so terribly ill. I have never thought that this fight would become our life. I have imagined that there would always be signs or some evidence in family history that would prepare people for a possibility of such a diagnosis. Now I know that this diagnosis is much less rare than I would have ever thought. This is Anika’s fight but this is also a fight for all other babies with SMA and the babies that might still be born with it. Anika and other children like her, that are currently fighting to receive gene therapy, are paving the road for children that are yet to be born. They are rising awareness about this horrible disease and the necessity of enabling gene therapy to every child in need. The more evidence is for positive effects of the treatment now, the more probably it is that this treatment will become the standard for treating SMA. By supporting Anika in her fight, you will also contribute to the fight for other children with SMA to have easier road to the treatment and easier childhood.
Let’s create future together. For Anika. And for the children who are yet to be born. <3
Organizer
Danica Novakovic-Stojanovic
Organizer
Perth WA
