The little warrior with serious diagnosis

Dear all,
I would like to ask you for help and raise funds for this little warrior. There are some words from Riško's parents, so please read the whole thing :)
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We are parents to 21-month-old baby boy Riško Balint and would like to kindly ask you for your support.
Riško is a smiling child who is very eager to get to know the world and do the ordinary things in the same way as other children of his age do. However, it has not been given to him.

When Risko was 6 months old, he was diagnosed with a genetic disorder known as Type 1 Spinal Muscular Atrophy (SMA). SMA is a genetic nerve-muscular disease in which a protein-forming gene is either missing or mutated. The gene is responsible for the normal function of the motor neuron that controls muscle work. To make a long story short, when Riško was 6 months old, we were notified of the diagnosis that completely shattered our world. We were told that Riško would gradually lose all his muscle strength which would also affect his breathing muscles and the muscles responsible for feeding.

In his eight month our son received the first dose of medicine to stop the disease. This medicine, however, does not cure, only slows down its progress. After seeing some tiny improvements, another blow came. Riško was 9 months old when he got bilateral pneumonia caused by RS virus. At that time doctors had to intubate him while a device had to breathe for him for several days. Later he was put in sleep, and his subsequent extubation was one great miracle. Unfortunately, that was not the end. After extubation Riško got another pneumonia right after being transported from the department of anesthesiology and resuscitation. In June, after the 5th dose of his medicine, Riško got pneumonia for the third time. In 2019, our smiling hero Riško, was overcoming one obstacle after another. Despite 3 pneumonias, RSV, intubation, excessive mucus, low weight, choking several times and eating through the feeding tube Riško has not lost his strong will to live.

In the midst of our struggles we did not give up looking for other treatment alternatives. In May 2019, the US approved a new gene therapy. Since June we have been collecting information about this treatment, and approached a hospital in Boston to find out if Riško would be suitable for this therapy.

 After submitting all the medical reports to the hospital we have been confirmed that Riško is suitable for this treatment. Consequently, we went on to look for ways to get the medicine that is presently not registered in Europe and is currently the most expensive medicine in the world. It costs $ 2,125 million consisting of a single dose. We have also approached a hospital in Slovakia that would be willing to administer the medicine to Riško after all the legislative requirements regarding the import of the medicine have been fulfilled. Nevertheless, we are required to buy the medicine ourselves which represents the biggest challenge for us. The medicine must be administered within 2 years of patient's life. So it is a race against time. Our last chance to get the medicine is to ask for financial help from good people. This medicine will be able to correct the gene responsible for the production of protein, which is critical for muscle function.

We no longer want to wake up worrying that our child will remain in critical condition. We do not want to fear that a sudden fall of saturation levels will suffocate Riško or that his breathing will collapse during the next infection. We want to show him the world, raising this little boy to be a decent man. We want to teach him to be independent. We want him to study and do everything he enjoys – do the very things that most healthy people take for granted. However, we need your help and support to make this happen. We believe that there are many good people in the world and therefore, we remain hopeful that we will be able to buy the medicine for Riško.

At the moment Riško is finally at home from ICU, where he was hospitalized with another pneumonia.
His will to live is strong and we will never stop fighting together for better days without the need of machines and medical devices.

→Riško needs Zolgensma

→You can find more information about Riško on FB

Donations ()

  • Christina Stark 
    • £75 
    • 11 d
  • Andreas Stark 
    • £100 
    • 1 mo
  • Anonymous 
    • £10 
    • 1 mo
  • Dominika Aliaj 
    • £100 
    • 1 mo
  • Jana Medek Jurkulakova  
    • £10 
    • 1 mo
See all

Organizer

Marek Toder 
Organizer
Belfast, Northern Ireland, United Kingdom
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