Four cancers in 18 years❗Li-Fraumeni syndrome means there’s a constant risk of developing more❗

This illness doesn't give you a sense of security

Marcel has Li-Fraumeni syndrome, a rare genetic condition that increases the risk of cancer. This diagnosis means he needs to be constantly vigilant and respond quickly to any changes.

We had to start over four times

My son has already battled four cancers in his 18 years of life. In May 2025, he underwent a very difficult surgery to remove a malignant tumor from his pelvic bone and have a prosthesis implanted.

After several more rounds of chemotherapy , the surgical wound became infected. In August, another surgery was necessary, following which neurological complications developed in the form of neuropathy in the left leg and foot.

A return to full fitness is not a given

For over six months , Marcel got around in a wheelchair; later, he tried to regain his mobility using crutches. He was in severe neurological pain. We were told it was unclear whether he would ever walk again. Today, he got out of his wheelchair and put away his crutches. This is a huge step. However, he still requires intensive rehabilitation, as sensory and balance issues mean that every step requires careful attention.

Operation after operation

Marcel’s left leg had previously been affected by tumors. In 2021 and 2022 , doctors removed bone and soft-tissue sarcomas and then performed a complex reconstruction of the tibia using the fibula from his other leg.

Treatment also includes daily physical therapy

Marcel needs intensive, highly specialized rehabilitation, which is not sufficiently covered by insurance. This is the only way for him to continue regaining his mobility.

Time matters more here than anywhere else

Because of Li-Fraumeni syndrome, Marcel must undergo regular, rapid diagnostic testing. However, tests that are safe and effective for him are not readily available. He cannot undergo radiation-based diagnostic procedures. Whole-body MRI and PET-MRI scans are expensive, yet essential. It is precisely thanks to the regular, early diagnostic testing conducted so far in the pediatric ward that Marcel has been able to respond so quickly to emerging health risks.

He looks to the future with hope

Marcel is a cheerful, passionate young man. He loves music and concerts, especially K-pop. He’s studying foreign languages. He’s taking his high school graduation exams this year. It’s a life that goes on alongside his illness, not just revolving around it.

Every form of support means the world to us. It allows us to continue with the treatment, rehabilitation, and diagnostic testing that are essential in this situation.