“Together for Kornél and Zsombor” Foundation
“Together for Kornél and Zsombor” Foundation
Kornél
&
Zsombor
“Together for Kornél and Zsombor” Foundation
Tax number: 19307893-1-03
Domestic bank account number: 11732033-22823469
International bank account number (IBAN): HU42 1173 2033 2282 3469 0000 0000
SWIFT: OTPVHUHB
About us
Our story...
After many attempts and medical assistance we were still unable to conceive a baby, so upon our doctor’s recommendation we signed up for an IVF program. Miraculously it worked on the first try and our little prince was already on the way. It was a true miracle when our son Kornél Rácz was born on St. John’s Day despite being due in early February. He came into the world much earlier on December 27.
We found ourselves in the neonatal intensive care unit, but he developed well and was able to come home shortly after. Everything went fine, and he performed well during the regular checkups. Due to his tight hips ,,Dévény therapy” and conductor guidance were recommended which we diligently followed. It was later revealed that during this time a conductor noticed something unusual (calf thickening and slightly robotic movements) but unfortunately we didn’t provide our contact information so they couldn’t reach us. We started attending therapy but something didn’t feel quite right. Frequent falls and a somewhat waddling gait prompted our health visitor recommend to see a conductor again. We accidentally met the same conductor again, who this time suggested that we should investigate further and request a referral from our family doctor.
Meanwhile, our second little miracle, Zsombor Rácz was born. It was pure joy—our dream family was complete. A few weeks later, we found ourselves at the children’s department in Baja with Kornél. Mom stayed home with Zsombor so Dad accompanied Kornél for the tests and bloodtest. We anxiously waited for the results. The staff at the pediatric ward reassured us there was no serious problem, but they suggested that we should wait for the blood test to confirm before heading home. I called Mom to put her at ease. A few hours later I asked about the results and they informed me that they had arrived. Great… everything must be fine and we could go home. But then the doctor noticed something concerning so she had to consult with someone else. Stunned I waited for her to return. She and another doctor approached me and in a trembling voice they said “It’s serious.” Everything went white around me, but something kept me standing. They explained that Kornél’s CK levels were extremely high—a sign of a muscle-wasting disease—and immediately scheduled us for an appointment at the 2nd Pediatric Clinic.
We were sent home right away but I had no idea how I even managed to get there. Mom heard the car stopped and rushed out to meet us, probably thinking that everything was fine since we were home. She saw the look on my face but didn’t want to believe it. I hugged her and through sobs simply said, “It’s serious.” Meanwhile the family was busy with Kornél and didn’t notice anything. We were devastated and we couldn’t fully rejoice in Zsombor’s arrival. Although our family was blessed with another miracle he already sensed something was wrong. Thankfully Mom’s milk supply continued and she was able to nurse him but little Zsombor cried a lot, feeling the deep pain we were experiencing.
We were quickly seen at the clinic but due to the pandemic genetic test results took a long time. The diagnosis was confirmed: Kornél has Duchenne Muscular Dystrophy (DMD). The news hit us like a ton of bricks, and we were shattered. Our family helped us start to rebuild. The first step was testing Mom, which revealed that she is a carrier. Fear struck us again—we prayed that little Zsombor shouldn’t be affected because we wouldn’t be able to face this again. He was tested too, and the anxious waiting began once more. We were convinced he couldn’t be affected. Why would we have been blessed with him otherwise? He was conceived naturally, something we never thought possible. Tragically, life had other plans. The result came back—Zsombor is also affected.
The news felt like a knockout punch. We couldn’t have survived without the support of our family. For a long time, we were lost in despair and couldn’t find an optimistic outlook. Slowly, with the help of our loved ones, we began to pick ourselves up. We started researching and connecting with other families facing similar challenges, joining a DMD Facebook group. The community offered immense support, sharing critical advice on essential care for Duchenne children such as the importance of regular therapeutic massage, physical therapy, and timely steroid treatment. They also emphasized the need for assistive devices like the proper child seat for maintaining spinal posture.
Needless to say, everything has meant an enormous financial burden. Encouraged by family and friends we decided to establish a foundation to ensure we could provide everything our children need without staring at empty bank accounts. This led to the creation of the “Together for Kornél and Zsombor” Foundation in 2021 with the mission of supporting the rehabilitation, lives, and daily needs of our children affected by Duchenne Muscular Dystrophy. While Duchenne is currently incurable, a gene therapy has been available since June 2023 that could stop the progression of muscle degeneration. We are now fundraising for this therapy. The therapy for both children costs 2.1 billion HUF.
For more information, please visit our Facebook page!
Duchenne muscular dystrophy (DMD)
Duchenne muscular dystrophy is a congenital, hereditary disease characterized by the gradual destruction of muscle cells. The muscle cells are replaced by fat and connective tissue that are incapable of muscle function, resulting in the patient becoming increasingly weak and eventually having difficulty taking care of themselves.
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