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Desperate race against time and deadly disease❗️Please help us safe little Jas!

Jaś Kozub
Zbiórka zakończona

Desperate race against time and deadly disease❗️Please help us safe little Jas!

9 480 429,86 zł ( 100.69% )
Wsparło 179391 osób
Fundraising organizer: Fundacja Siepomaga
Jaś Kozub, 6 months
Chrzanów, małopolskie
SMA 1
Starts at: 09 June 2021
Ends at: 08 September 2021

Result

Mamy dla Was wspaniałą wiadomość! 💚

Historia małego Jasia chorego na SMA poruszyła całą Polskę. 79 dni – tyle wystarczyło, by zebrać ogromną sumę ponad 9 milionów złotych na najdroższy lek świata! 

Wszyscy tak bardzo czekaliśmy na dzień, w którym terapia dojdzie do skutku! I…stało się! 10 września o godzinie 11:45 Jaś przyjął terapię genową w walce z SMA, która ma za zadanie zatrzymać postęp choroby! Radość jest nie do opisania, a ten cud mógł wydarzyć się dzięki Waszym ogromnym sercom! 

Razem wielką mamy MOC! Dziękujemy!

Jaś Kozub

Jaś Kozub

Description

Our son Jas is three months old and we are fighting for his life. He was diagnosed with deadly genetic disease. Please read emotional parental appeal and please help us safe this little boy.

In third month of Jas’s life our world fell apart into tiny pieces... On 26th May, Mother’s Day to be precise, we have received results of the genetic screening confirming SMA type 1. This disease means our child’s muscles are weakening!

We have started desperate race against the time! Hope for Jan is genetic therapy worth 9million Polish Zloty! We are begging for help! Every day is of the essence!

Jaś Kozub

Jas was born 19th February 2021. At the hospital we noticed worrying signs: he was not moving as much as other new-borns, he wasn’t vigorously kicking his legs or lifting his arms. It looked like he did not have energy to perform any movements... Doctors were not worried, they were calming us down, dismissively saying that our son will “liven up” in time. We have heard that he simply is a very calm baby.

Soon after leaving the hospital, we have taken our son for paediatric assessment, who noticed low muscle tone. We then saw a physiotherapist. Our son’s condition was not improving. One day our physiotherapist noticed that Jas has contractures (tight muscles) around his legs. Our journey through doctors’ assessments began. Orthopaedist, another paediatrician, referral for general diagnosis…

At the beginning of May we landed in the hospital for detailed screening procedure. And that’s how step by step we finally got to the bottom of Jas’s condition. That’s when for the first time we have heard that Jas has got suspected SMA type 1. “Suspected” was the key word we were desperately holding onto until the last moments. We believed that genetic screening tests would rule out this deadly disease.  Unfortunately, the results were clear…

Jaś Kozub

Jas is suffering from SMA type 1. Spinal Muscular Atrophy is a very rare genetic disease. Due to genetic defect the neurons in the spinal cord are dying out. Genetic mutation destroys not only muscle strength responsible for movement but also the most important muscles responsible for breathing... This illness is a death sentence… Many children with SMA will be on life support machine in the very early stage of their lives. Just a few years ago, children like Jas were subjected to slow and painful death…

The results were devastating.  We have been immediately referred for medical treatment, to distribute medication which slows down the progress of disease and has to be distributed through Jas’s lifetime. The medication is injected into spinal cord directly. This means immense suffering and pain! On top of that every day we are practising physical therapy with Jas but it still isn’t enough to stop the progress of the disease.

Jaś Kozub

Modern medicine gives us chance to fully stop SMA type 1! This chance is a genetic therapy, the most expensive treatment in the world….

For the best results and prognosis Jas must be treated no later than when he is six months old, before the disease damages his little body completely! He would only have to have one genetic treatment in his life!  Up until recently this treatment was available only in USA. Now it is also available in Poland. Unfortunately, the treatment is not funded, therefore we must pay more than 9million Polish Zloty.

We decided to move heaven and earth to safe Jas! It is a race against time because genetic treatment can be distributed up to maximum body weight of 13.5kilograms, it is too dangerous if any heavier.

Jaś Kozub

Will we make it on time? This question is not letting us sleep. We would give up everything for Jas’s healthy life. We are not able to raise those funds ourselves. We believe in miracle. We believe we will find people who would be willing to help us. We cannot give up, not when our child’s life is at stake.

We are begging you from the bottom of our hearts, please help us safe our little son. Before it is to late…

Jas’s parents

Jaś Kozub

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Jaś Kozub

Update, 18.06.2021:

As a Mother, I know there will be many more bad moments. Everything is new for us, often terrifying like those few last days... Last week we were in the hospital with Janek. I was taught by the doctors how to use the respirator, Janek was taught how to breathe. I know that the respirator is there to take the pressure of those little lungs. I know it all, and yet I am still so hopeless...

No parent in the world should see their child under the respirator. My heart is shattered into million pieces when I hear Janek crying and I am unable to do anything to make him feel better.

Jaś Kozub

Janek has qualified for the home ventilation of the lungs. After our next stay at the hospital we will be taking the respirator home. Before Janek was born, when we were setting up his bedroom we never thought that he would need any kind of medical equipment. Seeing this is scary but I know it will help our son to breathe better. It will keep him in his best condition until he receives the much needed genetic therapy treatment.

We will not give up! Janek is fighting and we are fighting with him. Thank you for supporting us, being with us. We are asking you, if you know someone who has not yet heard about Janek, please tell them Janek's story and help us save him!  

Paulina, Janek's mum

Jaś Kozub

Update, 17.07.2021:

Janek's state of health is bad❗️Genetic therapy should be distributed as soon as possible!

Shock, disbelief, pain... We knew it is bad but we didn't realise it is extremely bad! On Friday we went to the examination done by Chiara Mastella – a specialist with long experience of working with children diagnosed with SMA. According to her Janek is in poor state of health!

We are dealing with the worse type of SMA! Janek's breathing problems are getting worse- he must use the ventilator for most part of the day! His spine condition is bad and because of his low body weight he is unable to qualify for a spine brace or spinal support corset. Problems with swallowing reflexes are occurring more often. Without gene therapy those skills can be lost very quickly.

Jaś Kozub

It's very bad and Janek is only 4months old. Bez terapii może bardzo szybko stracić tę umiejętność…

The progress of the illness is spreading incredibly fast. Every moment his condition might deteriorate dramatically and that's why he needs the gene therapy as soon as possible.

Unfortunately we still have got 7mln Polish Zloty to raise.

From the bottom of our hearts we are asking You for your help, so we can finish this fundraiser as soon as possible and save Janek. Please stay with us, we must be able to help in time...

Janek's parents

9 480 429,86 zł ( 100.69% )
Wsparło 179391 osób

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