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Let's help Iga!

Iga Kaczmarczyk
Urgent!

Let's help Iga!

1 473 681,00 zł ( 17.86% )
Left: 3 days Still needed: 6 775 035,00 zł
Donated by 69023 people

Donate via text

to 72365
Text 0155697
2,46 zł gross cost (including VAT)
Donate via text now
Campaign goal:

Gene therapy

Campaign organiser: Fundacja Siepomaga
Iga Kaczmarczyk, 6 months
Opatów, świętokrzyskie
SMA
Starts at: 20 October 2021
Ends at: 30 January 2022

Campaign description

Our little daughter has SMA! When we heard the verdict, we couldn't believe it... After all, not so long ago, we were involved in helping another child, who was raising a gigantic amount of money for gene therapy. And now it turned out that we were also affected...

Iga has a fatal disease, diagnosed late, because we were not included in the screening tests yet. Because of this, the disease has already taken so much... We start the fight for gene therapy to stop SMA as soon as possible. And we are asking for help!

Igunia was born on July 1, 2021 and at the beginning nothing foreshadowed the drama we are about to experience. The pregnancy was without complications, as was the birth. We left for home, enjoying with my husband the most important thing - that our baby is healthy. At the time, we still didn't know how wrong we were living....

Iga Kaczmarczyk

Iga seemed weak to me from the very beginning. She did not turn her head, she hardly moved her arms and legs. I punished myself in my mind that I was probably exaggerating and that my daughter was developing at her own pace. A boy with SMA lived not far from us and we were involved in helping him. So I thought it was my subconscious telling me that my daughter also had SMA. But SMA is extremely rare!

When Iga was 1.5 months old we became very worried. She stopped moving her legs completely, it seemed to me that she breathed strangely and she choked too often when eating. The paediatrician immediately issued a referral to a neurologist with the note: "suspected genetic disease".

My daughter and I spent three days in hospital for tests. Nobody told us anything, they told us to wait for the results. On discharge I read that they already suspected SMA specifically. Two weeks later the confirmation of the diagnosis came, and our world collapsed in one second....

Iga Kaczmarczyk

We know what the disease is. We know what it entails. It is so hard to believe that our daughter, our first, long-awaited child, has been affected! We were unlucky - although screening tests are being introduced in Poland, our province is last on the list. Maybe if Igunia had been diagnosed earlier and treatment implemented sooner, the disease would not have done so much damage!

She received the first dose of medicine, which is reimbursed in Poland, on 28 September. She started to move her arms and legs a little better. However, there are still problems with breathing and eating, she still happens to choke. We do not have any equipment, although we are trying so hard. Doctors already recommend respiratory support, but it is not that easy to get a ventilator.

We have already been through hell once. On 5 October at night Iga developed apnoea. It was not any infection, simply the muscles could not cope. We ended up in the emergency room. We were dying of fear...

Iga Kaczmarczyk

Everywhere they hear SMA, they recommend observation. When something happens, we are told to go to the hospital. We are only at the beginning of an extremely difficult road, but we know we will make it. We have to, for our little girl! That is why we decided to raise money for the most expensive medicine in the world, which has already helped so many children. We want our Igusia to be among them. From the bottom of our hearts, please help us raise this gigantic amount of money and stop this cruel disease as soon as possible!

Jola and Darek, Igusia's parents

1 473 681,00 zł ( 17.86% )
Left: 3 days Still needed: 6 775 035,00 zł
Donated by 69023 people

Donate via text

to 72365
Text 0155697
2,46 zł gross cost (including VAT)
Donate via text now

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