Marko – Serbia
Marko’s Story
Craniofacial abnormalities have no prejudices when it comes to gender, ethnicity, faith or even what side of a war one is on – if only we could say the same about people. BUT, we can! Initially given a death sentence, a little boy from Serbia was embraced by the world to give him a chance at life.
“There is something wrong with his head.” Not the news any parent wants to hear, but they were the first words Mirko and Rita Marinkov heard when Marko was born in April 2007. Doctors were reluctant to let the new parents see their baby boy. Subsequently diagnosed with Crouzon Syndrome, Marko was with his parents only briefly before he was transferred to a Belgrade hospital where he lived during his first three months of life.
Mirko quit his job to become a full-time caregiver to Marko, and the next couple months proved to be an unwelcome and daunting challenge. Marko developed hydrocephalus, fluid on the brain, and only one doctor was willing to operate, inserting a shunt to relieve the pressure and swelling. Serbian doctors gave Marko only two months to live, and Rita and Mirko were told to take their son home to die. “We were desperate. We could just not sit and wait for him to die,” Mirko shared.
In December, the Marinkovs finally found hope when they saw a documentary on Petero, a former WCF patient from Uganda with Crouzon Syndrome. WCF asked Dr. Eric Arnaud, a Medical Advisory Board member and craniofacial surgeon at Hospital Necker in Paris, to review Marko’s medical records, CT scans and photographs. Upon his evaluation, Dr. Arnaud proposed two different surgeries and offered to donate his surgical services. All prayers seemed answered; however, road block after road block appeared and threatened any chance of saving Marko.
Yes, the doctor was donating his services, but not the hospital. Other related medical procedures would be necessary, plus Marko may need future surgeries as he grows. Serbia does not participate in the European Union’s public health plan and has no governmental funds of its own available to help. The initial surgeries would also take weeks. With no family or friends in Paris – one of the world’s most expensive cities – or nearby, the family had no place to stay or enough money to cover the long trip or food. The Marinkovs also had to secure visas in order to enter and stay in France. The obstacles seemed impossible to overcome.
The world could have turned its back on the Marinkovs for any number of reasons, including that they were simply Serbian, born in a nation whose reputation could be considered unfavorable from the war in Kosovo – but it did not. As WCF searched for help, one by one people and organizations put any biases aside and stepped up to save this little boy none of them knew and support his family, desperately trying to save him.
Through The Ray Tye Medical Aid Foundation in Boston, Ray Tye generously offered to cover the hospital and additional medical expenses. The hospital would not approve surgery until payment was made, so immediate funding was crucial. Contacted by way of the American Church in Paris (Protestant), the American Catholic Women’s Organization (ACWO) of Paris provided outreach and support, including food and gift cards. One woman, not a member but on the ACWO mailing list, even recruited her husband for help. Emmanuel Kaspereit, an attorney in France, offered his services pro bono in case the Marinkov family needed a visa extension. Another ACWO member, Claire Hemrika-Gordon, incredibly opened her home to the family until their return home to Serbia at the end of April.
The pure, unconditional generosity of these strangers allowed the Marinkovs’ worry to be focused only on their little Marko at the most critical of times. In late February, Marko underwent his first surgery. The six-hour procedure repaired a Chiari malformation, brain tissue protruding into his spinal canal as a result of a misshapen skull, which can be fatal. In the first photos of Marko after the surgery, a glimpse of relief could be seen in his eyes and tired smile. More than a month later, Marko had his second surgery and remained in the hospital for bone distraction, a process to further correct bone deformities. Two weeks later, Marko’s treatment was complete and he celebrated his first birthday in Paris “a very happy baby” full of smiles.
After a year of emotional ups and downs, Marko, Rita and Mirko are finally home in Serbia able to celebrate. Finding salvation for Marko in the heart of strangers thousands of miles away was a miracle coordinated by WCF. “You saved our boy’s life and offered him an opportunity for a new life. We still cannot believe what happened in the last few months. We are very thankful to you for not rejecting us at the beginning and for doing everything to return all of us to life by helping our little boy.”
Rita and Mirko share that Marko continues to do well – he is growing and “always smiling.” He attends physical therapy and is learning how to sit up by himself. Marko is also learning how to take in real food, as he has always been tube-fed. “We are now in charge for giving him love, education, nice childhood and we are determined and strong enough to provide that,” Rita and Mirko write. In October, Marko will return to Paris for another surgical procedure by Dr. Arnaud.
People of the world only seem to put their differences aside and come together in unity in times of mass devastation or the Olympics every two years. How wonderful it is when we surprise ourselves – just to save the life of one child.
