We present the call of Natalia, mother of Maja:
Her arrival in the world added to the happiness of our family. In our silent prayers we have always asked only for health for us and our children. To some extent, Maja developed in the same way as her peers. The balances, while less frequent due to the pandemic, were not inaccurate. Unfortunately, the extended hiatus in vaccinations and the lack of normal access to health care went hand in hand with troubling symptoms.
My mother’s intuition told me that something was not right. At the time, however, I was advised to wait and told not to overdo it. And I saw that Maja sits alone when she sits, doesn’t straighten her back, doesn’t crawl, doesn’t try to grab her legs like other babies. The first consultations with physiotherapists confirmed my concerns, although at the time there were still suspicions of low muscle tone. The investigation continued and I waited anxiously for information.
I remember the first time I heard these words: SMA. It cooled me down. When I received confirmation of my diagnosis on May 17, I was speechless. Until the end I thought this was a misunderstanding… And yet we were faced with the brutal reality.
There is a race against time for little Maja’s health. You can support the fundraiser!
“I know that if we don’t tackle the disease quickly, Majeczka’s hope of salvation will be lost”
The first difficult decisions are ahead – the choice of physiotherapists, purchase of equipment, further treatment and consultations. Everything is changing at an alarming rate, we tremble with fear as we think of Maja’s future. We know one thing that in order for her body to produce a protein on its own, which it can’t produce right now because of a genetic defect, and which is necessary for the proper functioning of muscles, gene therapy is necessary. A therapy that is dizzying.
Realizing that every day counts in the fight against disease is extremely difficult for us, so please help! For support that can give our daughter a chance at fitness and a normal life. That we don’t fit her in a wheelchair, but guide her during the first steps, that her breathing is stable and even and that food is not limited to a plastic tube.
We cannot be alone in this struggle – we must have the support of thousands of angels, thanks to whom we will fight for the future of Majeczka. It is you who can change the fate of our daughter, we are counting on you a lot!
When Majeczka looks at me confidently, I feel like screaming. Of helplessness, pain, fear… Because although we have only just learned about the disease, I understand every day what we will be dealing with. The fear is growing… I know that if we don’t tackle the disease soon, Majeczka’s hope of salvation will be lost.
“We put everything on one map”
I am so afraid that I will have to control every kilo of the weight to know that administering gene therapy is still possible because treatment is possible for children up to 13.5 kg. I know we have a long and difficult road ahead of us, but I also know that with your help anything is possible!
This diagnosis cannot be a judgment. We put everything on one map, so we fight for what’s best for our daughter. Thanks to you we can make our dream come true, thanks to you we can perform a miracle and make sure that Majeczka’s life is not doomed to suffering, pain and limitations. Your good heart can change a lot!
You can donate for Maja’s treatment here!
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