Adaś is fighting DMD - a fatal disease that wants to take his life away❗️ URGENT HELP is needed❗️

My heart shattered when Adam once asked me this before sleep: “Mommy, will I have big and strong arms and legs like my brother and sister?” I looked in his eyes and tried not to burst into tears. I’m still in shock that he would ask me this question exactly one day before receiving the DMD diagnosis, as if he already knew… The next day, the doctor called and said that my son was terminally ill. Her words made me go weak in the knees…

My husband and I have three children. We have always lived an happy, ordinary, good life. Konrad, our oldest son, is in a technical college. Weronika is in the 6th grade, and Adaś, our youngest, goes to kindergarten. He’s a volcano of energy and loves to sing, dance, draw, and play with our dogs. He plays with his cars all day, watches “Paw Patrol,” and likes kindergarten and his teachers.

In our home, we speak three languages, including Vietnamese, which is my husband’s native language. When Adaś experienced a speech delay, we thought it was normal for a child raised in a multilingual environment. After all, he understood everything we said to him and pointed to objects. He eventually started to talk.

To promote his further development, we started seeing a speech therapist and attending sensory integration classes. Sadly, at the therapy center, we were told that Adaś might have had an autism spectrum disorder. We then decided to enroll him in an early intervention program, which also required providing Adaś’s blood test results.

The liver function test results were irregular - liver enzymes were elevated to 10 times the upper reference limit! Adaś was immediately admitted to the hospital’s gastroenterology ward, where we learned that he also had elevated muscle enzymes. For the first time, the doctors suspected a muscle dystrophy and ordered genetic tests, which revealed the worst possible diagnosis: Duchenne muscle dystrophy (DMD). Our world fell apart!

What I learned about DMD made my knees go weak… It is a progressive, genetic disease that destroys muscles. First, it affects the arms and legs, and then the lungs and heart. It leads to a slow and untimely death. The diagnosis came as a great shock to us, since no one in our family has ever had DMD before, including our older children…

Adaś immediately started intense physical therapy and was also prescribed oral corticosteroids. Although it can only slow down the progress of the disease that wants to take our little son away, it is the only available treatment in Poland. The only real chance for Adaś’s recovery is gene therapy abroad.

In gene therapy, a modified gene is delivered via a single intravenous (IV) infusion to the affected person’s muscle cells to promote production of micro-dystrophin protein, which their body cannot make. Its purpose is to restore muscle strength, stop further damage, and save lives. Unfortunately, it is expensive - it costs several million zlotys and isn’t reimbursed. This is why our only hope is this fundraiser.

We have no other choice but to give it a go. We love our children, and we love Adaś with all our hearts. Right now, we are waiting for him to be qualified for gene therapy in Japan. We will keep you posted about everything!

This is why we have already started our fundraiser. The amount to raise is enormous…Even if we sold everything we have, used our family’s savings, and took a loan, we still won’t be able to pay for the treatment. Today, we are asking you for help to save our son’s life! If Adaś fails to receive gene therapy, he will face a lifetime of pain and suffering. We cannot let it happen…

We’re begging you for support!

Adaś’s parents