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Thank you for all our donators! Delara’s Fundraising was successful!
[/vc_column_text][vc_column_text]Thank you for your interest to help a child in need! Delara’s fundraising is closed with success.
Check out the other little SMA heroes that our Foundation is helping with fundraising.[/vc_column_text][vc_row_inner][vc_column_inner width=”1/2″][grve_single_image image=”5345″ retina_image=”5345″][vc_column_text css=”.vc_custom_1621341845208{padding-top: 20px !important;}”]
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Delara’s Story is magical!
[/vc_column_text][vc_column_text]? Delara is a playful, funny little princess and simply a burst of sunshine in her family’s life. Around her first birthday she received the life-changing diagnosis of Spinal Muscle Atrophy (SMA), which is one of the rarest genetic diseases in the world. The good news is that there is a cure, however it is the most expensive one in the world.
‼️Zolgensma therapy costs over 2 Million EURs + at least 3 months of treatment and recuperation costs.
?There are only a few hospitals in the world that could do this special treatment.The great news is, that the Bethesda Children’s Hospital in Budapest accepted the case of Delara, they are within the first 5 centers in Europe to successfully use gene therapy and became the first center in Central Eastern Europe in doing so. Up to today, the hospital has broadened its experience by effectively treating over 11 patients.
❤️ Delara’s fundraising was successful![/vc_column_text][vc_empty_space][/vc_column][vc_column width=”1/2″][grve_single_image image=”5157″ retina_image=”5157″][/vc_column][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]
Delara’s Story
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 lives 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 complications.
On 16th July 2019 at 11:00, Delara was born. Her parents were over the moon. Like any other baby, Delara was grew up very quickly, mesmerizing her parents with her new social and motor skills. And she is melting everybody’s heart with her charming and cute smiles. She is playful, funny and simply a burst of sunshine in her family’s life.
When Delara was six months, her parents were wondering why she is not crawling yet, but the doctors kept 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 referred then to a Neurologist, who immediately knew there was something severe going on in Delara’s case.
After some tests and observations, the Neurologist gave Delara the life-changing diagnosis of Spinal Muscle Atrophy (SMA). This 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 receive the results of all the tests and the very clear confirmation, that they have only a few months to save their daughter’s life. Doctors give Delara a few months to live, at best becoming paralyzed in most parts of her body. This story is shocking and sad, however it CAN have a happy end.
There is a cure for SMA, and with only one shot (1!!!!)-injection of a medicine Delara’s disease can be cured. However, this medicine, Zolgensma costs over 2 million Euros and there are only a few hospitals in the world that could do the injection procedure. Delara has only 6 months to receive this life-saving therapy.
2 million Euros + the treatment costs 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 Euros, 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. Let’s 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.[/vc_column_text][/vc_column][/vc_row]