🔥STOP SMA! Let's save Kajtus's life❗️

URGENT!
Charity collection verified by the Siepomaga Foundation
Supported by 101,972 people
3,957,788.62 zł (41.33%)
To reach our goal: 5,616,679.38 zł
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Goal
Gene therapy - the only chance to save the life

Kajetan Gatzke, 20 months

Świdwin, zachodniopomorskie

SMA - spinal muscular atrophy type 1

Started: 20 May 2020
Ends: 20 November 2020

Update 09 October 2020 

Drama! We’ve only got half a kilo (1.1 pound) left before it’s too late to administer the therapy…

Dear all, 
Something terrible has just happened. We’ve received information from the hospital in Lublin that the recommendations regarding the administration of gene therapy have changed and its administration is possible only for children who do not exceed 13.5 kg (29.7 pounds) of body weight... Kajtek weighs 13kg (28.6 pounds)...

I don’t know what to say. I don't know what to do. Everything we've fought for in recent months is slipping from our hands. It is a blow to the very heart. It is said that hope is the last to die, but it is what is happening right now before our eyes. We still have over PLN 7 million to collect and just half a kilogram of weight.

What should I do? Starve him for the next weeks or months so that he doesn't gain weight? We are broken, but we have to fight ... We don't even have one day to lose. Please, I beg of you, help us beat the time, help us save this chance for Kajtek!

Paulina – Kajtek’s mum

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April 10 – this day in our country is commonly associated with only one event. For our family, however, it is also another, also a terryfing moment. On that day we received confirmation that our Kajtuś suffers from a terminal illness, hiding under three letters - SMA. Spinal muscular atrophy type 1. Currently, the best way to fight this disease is gene therapy, which consists of a single administration of a drug that is said to be the most expensive drug in the world. It costs almost PLN 10 million ...

Neurons in the son's body die quietly, and our drama cannot be seen in the pictures. Kajtek smiles, plays carefreely with his older sister because he doesn't realize what awaits him. For today, fortunately, he doesn't need an intensive care unit, he doesn't have to be connected to a respirator. But how will it be in the future? Nobody really knows ...

The first alarming symptoms in the son began to appear in November last year. Kajtuś, despite being 8 months, still did not want to sit down alone and his hands were trembling. We went to a neurologist, but he didn't find anything suspicious. In his eyes, the son was just a slightly fluffy lazy, who will soon "move" and develop like other children.

Kajetan Gatzke

With this assurance, we felt better, without giving up the rehabilitation. In January, our physiotherapist still does not see progress and a decision is made to examine the son again. Another neurologist proposes a different type of rehabilitation, but Kajtuś still shows reduced muscle tone and his hands are still shaking. Finally, we get a referral to the hospital, and at the back of my head, these terrible three letters begin to appear, suggested by the Google search.

After admission to the hospital, the situation clears up quickly, and the lack of knee reflexes is the most important clue for the doctor. A worst nightmare comes true. Kajtek has SMA. Disease that destroys muscles, takes away performance, and in the most difficult cases leads to a respirator and ends in tragedy. A bomb starts to tick. Genetic tests are waiting to confirm the suspicions. Four weeks countdown in the middle of a pandemic, the result comes on April 10, we get a blow to the heart ...

Kajetan Gatzke

We have no time to lose and after less than 2 weeks Kajtuś is admitted to the drug treatment program , which is currently reimbursed and stops the devastating procession of disease, being the first and very important line of defense against the destruction of the child's health. However, it must be taken painfully in the spine for the rest of his life and does not give hope for full recovery. For today, such a chance is only gene therapy, approved only a year ago in the US, and not long ago(!!!) in the European Union, which costs more than $ 2 million and works causally, i.e. for a malfunctioning SMN1 gene ... We have to hurry because according to the latest information, it can be taken only for patients whose weight does not exceed 21 kg ...

We have been thinking for a long time about starting this charity. Lots of different thoughts, sleepless nights, searching for the best path and solution. Talks with parents of other children from SMA (including Kacpi) helped, who, thanks to the generosity of hundreds of thousands of donors, managed to collect this huge money for Siepomaga, and on their profiles you can see photos from the summit, which is giving the world's most expensive drug . A few months ago they were in the same place as we are now and did not hesitate to move heaven and earth to save their child. We have no choice but we also have to go this hard way, that's why we ask you for help.

Everyone who has a child knows that a 14-month-old baby with great pleasure uses the recently acquired walking skill. It's hard to keep up with such a toddler, because little feet carry him every day a few steps away, and the newly discovered world seems to have no end. Our kid is only at the creep stage. Not because he tries to imitate crawling commandos, but because SMA doesn't allow him to do more. We believe that gene therapy will put him on his feet. We believe that thanks to your support he will be able to live normally ...

Parents

Charity collection verified by the Siepomaga Foundation
Supported by 101,972 people
3,957,788.62 zł (41.33%)
To reach our goal: 5,616,679.38 zł
Donate Donate