Let’s make it possible for Ri?ko Balint and Alex Brdarsky to live.

Sometimes in my job I am faced with difficult personal situations. Situations that I can relate to as a human, and a as dad. Like this week where I met two of our employees in T-Systems Slovakia who's sons have a rare medical condition and need a cure. A cure that is not available in Europe (yet), but approved in the US. That has to be delivered before the child is 2. And which is very very expensive.

On February 19, 2020 my colleagues from T-Systems Slovakia will organize Charity Cake Day. On that day, for the third time in a row, TSSK colleagues will get together for a good cause. They will bake cakes and sell them for a voluntary donation. The collection proceeds from the upcoming Charity Cake Day will be donated to these two boys.

Read the full story below, or just skip to the end to donate. Let’s make it possible for Ri?ko Balint and Alex Brdarsky to live.

Ri?ko Bálint’s story

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 Ri?ko was 6 months old, we were notified of the diagnosis that completely shattered our world. We were told that Ri?ko 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. Ri?ko 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 Ri?ko got another pneumonia right after being transported from the department of anesthesiology and resuscitation. In June, after the 5th dose of his medicine, Ri?ko got pneumonia for the third time. In 2019, our smiling hero Ri?ko, was overcoming one obstacle after another. Despite 3 pneumonias, RSV, intubation, excessive mucus, low weight, choking several times and eating through the feeding tube Ri?ko 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 Ri?ko would be suitable for this therapy.

After submitting all the medical reports to the hospital we have been confirmed that Ri?ko 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 Ri?ko 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.

Ri?ko is 21 months old now and 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 Ri?ko 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 Ri?ko. We have created civil association BOJOVNíK, to help our Ri?ko get every medical device, machine and support medicine he needs.

Civil association BOJOVNíK:

https://ives.minv.sk/rez/registre/pages/detailoz.aspx?id=223061

Ri?ko needs Zolgensma:

https://www.zolgensma.com/what-is-zolgensma

You can support Ri?ko and contribute to:

Transparent bank account:

https://www.transparentneucty.sk/#/ucet/SK8909000000005166726293

Transparent bank account details:

IBAN: SK89 0900 0000 0051 6672 6293

BIC/SWIFT: GIBASKBX

Name of the account: BOJOVNíK

Bank: Slovenská sporitelňa

PayPal:

https://www.paypal.me/RiskoSMA1

Web portal ?udia ?udom:

https://www.ludialudom.sk/vyzvy/7135

Alex Brdarsky’s story

Cure for Alex.

Alex was born on July 20, 2018. For the first months we had a great time with him and his little sister. Gradually, however, we became worried that he can not turn himself into a belly. The beautiful season and the enjoyment of a little baby ended. A huge blow came when Alex stopped lifting his legs to his stomach at the end of the fifth month. The real condition of our baby was much worse than we thought.

Spinal muscular atrophy (SMA) grade 1. A diagnosis that has frustrated all our ideas of normal life. SMA leads to the gradual loss of muscle cells (and thus the ability to move) and subsequent death within two years of age. Affected are lower limbs, difficulty with swallowing and later with breathing. Patients with SMA either do not acquire the ability to sit, stand and walk at all or, if so, gradually lose this ability.

In May 2019, the US Food and Drug Administration (FDA) approved Zolgensma. It is the new and only gene therapy for children with SMA under the age of two, available so far only in America. In Slovakia, only "supportive" treatment with Spinraza, which has a different mechanism of functioning than Zolgensma, is available. Spinraza does not cure SMA, but slows down or stops the progression, is the deterioration of health. Zolgensma focuses on the genetic cause of SMA. It replaces the function of the missing SMN1 gene with a new SMN gene, in which motoneuron cells that have not died can survive, function and be maintained.

Alex could achieve a significantly higher quality of life after receiving this medicine.

At Boston Hospital, they identified Alex as suitable for Zolgensma. The price of Zolgensma itself is $ 2.185 million. With this single dose price, Zolgensma is the most expensive drug in the world. But we are not giving up and we have a challenging journey to get Alex's cure for his illness. But it's important that Alex gets the medicine until his second year, that is, by July 2020. Although we know that time is passing fast, having good people around us moves us forward and we believe that if we join forces, everything will be possible!

If we do it together, Alex will start a new life in a new way - steps. And one day we'll tell him that the whole world saved him from a genetic failure that could break his life.

For 2% donation

https://alexsmabojovnik.sk/2-percenta/

Alex needs cure

https://alexsmabojovnik.sk/

You can support Alex and contribute to:

Transparent bank account

https://ib.fio.sk/ib/transparent?a=2101684316

Transparent bank account details:

IBAN: SK18 8330 00000021 0168 4316

BIC/SWIFT: FIOZSKBAXXX

Name of the account: Alexsma

Bank: Fio Banka

PayPal Charity

https://www.paypal.com/pools/c/8lpXL3fDB9