?STOP SMA! Let's save Kacpi's life❗️

My hands are shaking, my heart is pounding, I’ve got a stabbing pain in my stomach. I can't think of anything but saving my son. If you are reading this story today, December 20th, it will mean that we have 272 days… If it is already early January, it means that there is only under 260 days left. I don’t go to  sleep at night so as not to waste even one hour. Every morning and sunrise is like another grain of sand in the hourglass that falls and cannot be undone. Son, I'm so scared...

We are racing against time and a disease so cruel that it is hard to even imagine it. SMA - three letters denoting spinal muscular atrophy and painful departure of our son. We have to make it before Kacpi's second birthday to receive the most expensive drug in the world. This is the only hope to overcome the disease. Hope that costs over $2 000 000... We beg you, we are crying for help!

At first glance, especially in the pictures, you cannot see how great of a danger for our child we are dealing with. We waited a long time for him and when it turned out that his little heart was beating right under my heart, my husband and I almost went crazy with happiness. Kacpi was born on September 17, 2018, exactly on my birthday. Could I dream of a better present? Finally, I could hug my two beloved men at the same time. Despite the painful history of our country, this 17th September would always be a sweet memory for me. Today I look at next year's page from the calendar and I am terrified of it.

Kacpi was developing properly during the first months. Soon, however, some warning signals began to appear. Every parent knows the feeling of waiting for the next milestone in the child's physical development. Every parent knows the feeling of joy when this moment finally comes. Our moments came with a delay... So we took action - doctors, rehabilitation, examinations. The neurologist indicated disturbing symptoms - decreased muscle tone, lack of deep reflexes, trembling of the hands. The warning light not only blinked but beat its eyes with all its strength. Finally, we were directed to a genetic clinic...

I hold in my hand a test result from a week ago, which, in addition to many difficult to understand specialized words, has one key sentence: this result corresponds to the clinical diagnosis of spinal muscular atrophy (SMA). The worst fears of the doctors were confirmed... Kacpi carries a delayed ignition ticking bomb that takes away muscle strength step by step, including the heart and diaphragm responsible for breathing. Just a few years ago it would simply mean a death sentence for our child. Today, luckily, at the end of the long tunnel you can see the light of hope...

There are four types of SMA, depending on when the symptoms of the disease occurred. Kacpi has type two. He managed to slip through the most critical stage of the child's development and some skills that we are now afraid of losing. We hope that the son will soon join the treatment program, which is currently refunded and withholds the destructive process of illness, being the first and very important line of defense against the destruction of the child's health. However, it does not give hope for full recovery...

Will it still be refunded? Nobody knows that either... For today, only gene therapy in the US offers a chance, approved only half a year ago. However, to use it, a child cannot be older than two years old and you have to pay over $2 000 000. We are not millionaires, we do not have such money. That's why we ask for your help...

We are full of emotions and we have to hurry... This charming 15-month-old blonde is now our whole world. We have been waiting so long to be proudly called parents, but we never thought that we would have to fight so unequally with a deadly enemy hiding under three letters... SMA will not wait. Every day, we see him choosing Kacpi, destroying neurons and stealing health. September 17, 2020 is approaching relentlessly, but we don't want to wait until the last moment. We must start therapy as soon as possible. If we're late, we'll have to wait for the end of the world...

Iga - Kacpi’s mother