Help Nemanja to save his life ❤

Dear friends,

We desperately need your help so that our 3-year-old son Nemanja can receive a stem cell transplantation in Turkey. This procedure could prove life-saving for him.

Nemanja was born full term but during his first few months of life, in April 2018, Nemanja was hospitalized due to an obstructive megaureter, which was corrected by surgery. After some time, he completely recovered. However, during his stay at the hospital, Nemanja was infected with Measles. He was only 6 months old at that time. Without any serious consequences at the time, he recovered from the virus.

In September 2020, Nemanja started daycare, and after a very short time, adapted well and enjoyed his time with his teachers and friends. Just like the majority of kids, during the first few weeks of daycare, he was exposed to a number of viruses that are typically spread among children and was often sick. In October 2020, he got a fever that caused a febrile attack after which he suffered a Drop Attack (or head falling every 3 seconds) and balance control symptoms started to show.

That was the first sign that something unexpected was happening. We immediately took him to the Children Neurology Clinic for testing, but they could not give us any diagnosis. During his time at the clinic, his drop attacks stopped, but at that time, he was so weak that he could not walk. In meantime, someone at the Center tested positive for COVID-19 and they had to close the Center. They sent us home and Nemanja’s health rapidly declined. He could not stand up or sit, and he was constantly screaming and crying. His body was simply giving up. We took him to the State Pediatric Clinic in hopes that they will be able to find out the cause of his illness. Even after multiple tests and other research that lasted almost two months, there was no solution and Nemanja reached a vegetative state. He could not recognize us anymore, he was not reacting to our voices, he could not move, his sleep was irregular, and his legs were suffering constant spasms.

Due to these severe muscle spasms, they placed a nasogastric tube, so he would not choke while eating. A lumbar puncture analysis revealed the presence of measles antibodies and we were finally told that he has a very rare and aggressive disease called a Subacute Sclerosing Panencephalitis (SSPE). Unfortunately, there is no cure for this illness, and it is fatal in the majority of cases. The main cause of this illness are Measles that are extremely dangerous for children under 12 months since their blood-brain barrier, that usually protects from viruses, is not fully developed and is not protecting the brain. Once the virus passes through, it stays in and slowly starts to destroy the brain. Therefore, when our son was infected with the virus when he was only 6 months old, the virus settled in his brain. Please note that all children under the age of one are at a huge risk from this rare disease, since the vaccine that protects them from Measles is usually given at 12 months. Unfortunately, in our case, the virus appeared much earlier and we were unable to protect our child.

The unusual part of our case is that this virus usually becomes active 7 to 8 years after the child is infected and Nemanja’s symptoms started after only 2.5 years. Doctors believe that COVID-19 likely sped up the process, but since so little is still known about COVID-19, they do not have any research on how it affects the body and triggers other diseases. However, the fact that it happened so early, while the brain is still in the developing phase, is actually providing some hope that a stem cell transplant can help, since research shows that stem cells are more effective with younger children.

As parents, we are not giving up hope and we found the way to potentially cure our son. The procedure is the stem cell transplant in Turkey and it would help Nemanja to get better and could potentially lead to a complete recovery. The surgeon that would complete this procedure has saved many children this way. The important part is that this procedure cannot have any negative impact on Nemanja, but can only help his recovery.

This medical treatment, along with other expenses, costs $40,000, but we hope that with your help, we will be able to collect this amount and save Nemanja’s life.

The sooner we are able to complete the procedure, the greater chance is for Nemanja’s recovery.

Thank you!