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Delara Thank you card

1.500 Ft (1.500 Ft + ÁFA)
Menny.:db
Gyártó: EliMo

She is a 18 months old smart, playful and happy girl. She is born with SMA Type 1, a rare genetic and progressive disease which is characterized by lower motor neuron, degeneration and muscle weakness. She has less than 6 months to receive a vaccine that can save her life. This 2.4 million dollar vaccine is the most expensive drug in the world.

We believe that your sharings and donations can make butterfly effect and save our little baby girl.”

Name: EliMo Alapítvány 

IBAN: HU69-10103056-51133800-01005997 USD

Swift:BUDAHUHB

Name: EliMo Alapítvány

IBAN: HU05-10103056-51133800-01005306  EUR

Swift:BUDAHUHB

 

Leírás

Delara's parents met each other in 2013. Soon after they met, they knew they want to build a family and spend the rest of their life together. Not knowing that both of them were carrying a very heavy baggage. Six years after their happy marriage, they felt ready to make their dream of becoming parents come true. They are both young, she was 29 and he was 33. They are healthy and in a happy and stable relationship. Not long after, they became pregnant.  Pregnancy goes on as smoothly as possible, all of the tests and controls were normal and there were no signs of any complication.

On 15th December 2019 at 11:00 Delara was born. Her parents were over the moon. Like any other baby, Delara was growing very quickly, mesmerizing her parents with her new social and motoric skills. And she is melting everybody’s heart with her charming and cure smiles. She is playful, funny and simply a sunshine in her family’s life. When Delara was 6 months her parents were wondering why she is not crawling yet, but the doctors were telling them that this was normal and some babies just skip the crawling, which is true. She could easily get into the sitting positions by her own and playing. A few days after her first birthday her parents noticed something odd in Delara's movements. Things that she was able to do by herself effortlessly (like sitting by herself or moving her legs) were all of a sudden too difficult for her and she needed help to sit. Her parents took her immediately to the doctor. Again they were told things are normal and they shouldn’t be too worried. Only this time they couldn’t accept this answer and asked for a second opinion. They were sent then to a Neurologist, who immediately knew there was something very serious going on in Delara's case. After some tests and observations, the Neurologist gave Delara the life changing diagnosis of Spinal Muscle Atrophy (SMA Type 1). This very rare genetics disease can happen in 25% of the children, when both parents are carriers of the affected gene. The Neurologist tells Delara's father: “there is only one medicine for your daughter, which is too expensive for you. Hopefully your future children wont be affected by this”!!! Delara's father was broken into millions of pieces and couldn’t tell Delara's mother what he was told. He was waiting for the results of some more genetics tests, hoping that all the previous tests were only based on some mistakes and misunderstanding. Only to received the results of all the tests and the very clear confirmation, that they have only a few months to save their daughters life. Doctors give Delara a few months to live, at best becoming paralyzed in most of the parts of her body. This story is shocking and sad, however it CAN have a happy end.

There is a cure for SMA type 1 and with only one (1!!!!) injection of a medicine Delara's disease can be cured. However, this medicine, Zolgensma costs over 2,4 million dollars and there are only a few hospitals in the world that could do the procedure of the injection. Delara has only 6 months to receive this life saving therapy.

2 million dollars + the costs of her treatment sounds like a big amount of money and a huge problem. BUT we believe that our hearts are bigger and collectively we can make this happen. We believe there are far beyond two million people who could and would donate 1 to 2 dollars, if they knew about this story. Please be Delara's voice, spread the word, talk to you family and friends and invite them to join us in this cause. Lets show to ourselves and to our children that humanity is powerful, that kindness is in our nature and that the power of masses is endless.

Leírás és Paraméterek

Delara's parents met each other in 2013. Soon after they met, they knew they want to build a family and spend the rest of their life together. Not knowing that both of them were carrying a very heavy baggage. Six years after their happy marriage, they felt ready to make their dream of becoming parents come true. They are both young, she was 29 and he was 33. They are healthy and in a happy and stable relationship. Not long after, they became pregnant.  Pregnancy goes on as smoothly as possible, all of the tests and controls were normal and there were no signs of any complication.

On 15th December 2019 at 11:00 Delara was born. Her parents were over the moon. Like any other baby, Delara was growing very quickly, mesmerizing her parents with her new social and motoric skills. And she is melting everybody’s heart with her charming and cure smiles. She is playful, funny and simply a sunshine in her family’s life. When Delara was 6 months her parents were wondering why she is not crawling yet, but the doctors were telling them that this was normal and some babies just skip the crawling, which is true. She could easily get into the sitting positions by her own and playing. A few days after her first birthday her parents noticed something odd in Delara's movements. Things that she was able to do by herself effortlessly (like sitting by herself or moving her legs) were all of a sudden too difficult for her and she needed help to sit. Her parents took her immediately to the doctor. Again they were told things are normal and they shouldn’t be too worried. Only this time they couldn’t accept this answer and asked for a second opinion. They were sent then to a Neurologist, who immediately knew there was something very serious going on in Delara's case. After some tests and observations, the Neurologist gave Delara the life changing diagnosis of Spinal Muscle Atrophy (SMA Type 1). This very rare genetics disease can happen in 25% of the children, when both parents are carriers of the affected gene. The Neurologist tells Delara's father: “there is only one medicine for your daughter, which is too expensive for you. Hopefully your future children wont be affected by this”!!! Delara's father was broken into millions of pieces and couldn’t tell Delara's mother what he was told. He was waiting for the results of some more genetics tests, hoping that all the previous tests were only based on some mistakes and misunderstanding. Only to received the results of all the tests and the very clear confirmation, that they have only a few months to save their daughters life. Doctors give Delara a few months to live, at best becoming paralyzed in most of the parts of her body. This story is shocking and sad, however it CAN have a happy end.

There is a cure for SMA type 1 and with only one (1!!!!) injection of a medicine Delara's disease can be cured. However, this medicine, Zolgensma costs over 2,4 million dollars and there are only a few hospitals in the world that could do the procedure of the injection. Delara has only 6 months to receive this life saving therapy.

2 million dollars + the costs of her treatment sounds like a big amount of money and a huge problem. BUT we believe that our hearts are bigger and collectively we can make this happen. We believe there are far beyond two million people who could and would donate 1 to 2 dollars, if they knew about this story. Please be Delara's voice, spread the word, talk to you family and friends and invite them to join us in this cause. Lets show to ourselves and to our children that humanity is powerful, that kindness is in our nature and that the power of masses is endless.