Adam Orlik EN
Skarbonka została założona z inicjatywy organizatora, który odpowiada za jej treść.
"Dear son, I was so happy when I learned I was pregnant with you, heard your heartbeat, and saw you as a little "bean" on a sonogram. I was lucky to find out about you from the very beginning. Pregnancy made my wish come true. I already believed that my prayers for your health were listened to.
Unfortunately, you suffer from a severe genetic disorder - Duchenne muscular dystrophy.
When I look at you, I cannot believe that the disease will take away all the milestones you achieved - muscle strength in your legs and arms, trunk, lungs, and eventually heart, leaving you for a slow, agonizing death.
As a mother, how can I sit there and watch you go through this?
I wish I could wake up from this nightmare, but I can't. Every day, I refuse to think about the symptoms of the disease, although I am perfectly aware of the inevitable. I won't accept it, although I know it is going to happen either way. When I realize it, I feel helpless and desperate.
I feel like my world has been falling apart - no mother wants her beloved child to suffer from such a terrible disease.
I wish I could protect you from its consequences, but I can't.
Despite my positive attitude, no one can see tears rolling down my eyes.
When I look at you, I cannot believe you would experience such a terrible fate. You are such a happy boy! I gave you life, and I don't want you to suffer.
Despite that, I know that we will experience happy moments.
Eventually, you will start to talk, which shouldn't be affected by the disease. You will get to know the world, which you will find interesting.
You will still manage to learn new things, develop your hobbies, meet new people, and visit new places. You must make it on time until you cannot walk and have no strength. I will support you in everything. I am there for you.
I love you so much, and I will do everything to let you enjoy your life. My love for you makes me stronger! I will fight for your health! I will keep track of the medical progress. I will do my best to make you defeat the disease on time so that the negative scenarios that come to my head do not come true. I will search for solutions all over the world for you.
Maybe the early diagnosis you received makes sense? Maybe the reason you came to this world in modern times, not in the past, is that there will be more treatments available for you soon.
Either way, I cry a lot, preparing for your battle. I will never accept our fate. I must stay strong for you, although sometimes I feel so weak."
The DMD can affect anyone since the gene responsible for muscle regeneration is one of the largest genes in the human body and is most prone to mutation, of which the outcomes are terrifying.
Adaś cannot receive a drug available in Poland, which slows down the progress of the disease.
The drug we are raising funds for is only applicable to patients with a specified DMD gene mutation, and Adaś is one of them.
Unfortunately, the gene therapy costs USD 3.4!
Important information according the fundraising goal:
The cost of the drug itself is USD 3.4 million and does not include the costs of the flight to the USA, hospitalization, several months' stay in the USA for health check-up after administration of the drug, or rehabilitation. The fundraising goal was estimated based on the current dollar exchange rate and information on the estimated remaining costs associated with administering the drug, and will be updated depending on significant changes in the drug price or the exchange rate and on how money is collected from other sources. We also hope that the price of the drug will drop, because other pharmaceutical companies are working on similar gene therapy, but we do not know when the drug from other companies will be approved. However, we cannot wait for it with folded hands, because it may turn out that Adam will be at the age when he will no longer be eligible for gene therapy. However, if we collected too little money, most of it would be allocated to another child with DMD, as well as to Adam's rehabilitation, which, as the disease progresses, will be the most important factor in keeping him alive as long as possible.”
We obviously cannot afford it! Time is running out - the drug must be administered between 4 through 5 years of age. The sooner Adaś receives it, the fewer muscles are affected. We believe it will stop the disease!
Please support and share our fundraiser. Any donation matters!
The mother
Wszystkie środki zebrane na skarbonce trafiają
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"Dear son, I was so happy when I learned I was pregnant with you, heard your heartbeat, and saw you as a little "bean" on a sonogram. I was lucky to find out about you from the very beginning. Pregnancy made my wish come true. I already believed that my prayers for your health were listened to.
Unfortunately, you suffer from a severe genetic disorder - Duchenne muscular dystrophy.
When I look at you, I cannot believe that the disease will take away all the milestones you achieved - muscle strength in your legs and arms, trunk, lungs, and eventually heart, leaving you for a slow, agonizing death.
As a mother, how can I sit there and watch you go through this?
I wish I could wake up from this nightmare, but I can't. Every day, I refuse to think about the symptoms of the disease, although I am perfectly aware of the inevitable. I won't accept it, although I know it is going to happen either way. When I realize it, I feel helpless and desperate.
I feel like my world has been falling apart - no mother wants her beloved child to suffer from such a terrible disease.
I wish I could protect you from its consequences, but I can't.
Despite my positive attitude, no one can see tears rolling down my eyes.
When I look at you, I cannot believe you would experience such a terrible fate. You are such a happy boy! I gave you life, and I don't want you to suffer.
Despite that, I know that we will experience happy moments.
Eventually, you will start to talk, which shouldn't be affected by the disease. You will get to know the world, which you will find interesting.
You will still manage to learn new things, develop your hobbies, meet new people, and visit new places. You must make it on time until you cannot walk and have no strength. I will support you in everything. I am there for you.
I love you so much, and I will do everything to let you enjoy your life. My love for you makes me stronger! I will fight for your health! I will keep track of the medical progress. I will do my best to make you defeat the disease on time so that the negative scenarios that come to my head do not come true. I will search for solutions all over the world for you.
Maybe the early diagnosis you received makes sense? Maybe the reason you came to this world in modern times, not in the past, is that there will be more treatments available for you soon.
Either way, I cry a lot, preparing for your battle. I will never accept our fate. I must stay strong for you, although sometimes I feel so weak."
The DMD can affect anyone since the gene responsible for muscle regeneration is one of the largest genes in the human body and is most prone to mutation, of which the outcomes are terrifying.
Adaś cannot receive a drug available in Poland, which slows down the progress of the disease.
The drug we are raising funds for is only applicable to patients with a specified DMD gene mutation, and Adaś is one of them.
Unfortunately, the gene therapy costs USD 3.4!
Important information according the fundraising goal:
The cost of the drug itself is USD 3.4 million and does not include the costs of the flight to the USA, hospitalization, several months' stay in the USA for health check-up after administration of the drug, or rehabilitation. The fundraising goal was estimated based on the current dollar exchange rate and information on the estimated remaining costs associated with administering the drug, and will be updated depending on significant changes in the drug price or the exchange rate and on how money is collected from other sources. We also hope that the price of the drug will drop, because other pharmaceutical companies are working on similar gene therapy, but we do not know when the drug from other companies will be approved. However, we cannot wait for it with folded hands, because it may turn out that Adam will be at the age when he will no longer be eligible for gene therapy. However, if we collected too little money, most of it would be allocated to another child with DMD, as well as to Adam's rehabilitation, which, as the disease progresses, will be the most important factor in keeping him alive as long as possible.”
We obviously cannot afford it! Time is running out - the drug must be administered between 4 through 5 years of age. The sooner Adaś receives it, the fewer muscles are affected. We believe it will stop the disease!
Please support and share our fundraiser. Any donation matters!
The mother
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