… the joy of meeting your newborn child for the first time.
… taking him home with such overwhelming love and joy in your heart.
… the heartache of learning something is gravely wrong with him and having few answers.
… learning that the medical treatment he needs is not available in your country.
… feeling scared, lost and alone without the knowledge of what to do next.
Can you…imagine it?
Could you live it…if it happened to you?
The Dzebic family in Bosnia and Herzegovina has lived it, for nearly 15 months. In March 2008, Adis and Aldina welcomed a son, Anes, into their world. They took him home and marveled at him. It was only a couple of days before their happiness turned to worry when Anes began to have what they would quickly find out were seizures. They took him to a local hospital, but were quickly sent to one of the few hospitals in Bosnia that can treat pediatric emergencies, “Kosevo”. There they learned that Anes was born with right-sided hemimegalencephaly. There they learned that the Bosnian medical system knew little about his condition and that they did not have the technology, nor the medical staff with the skills necessary to treat a child like Anes. There they learned that a special surgery, called a hemispherectomy, might be able to help their son; only to find out that it was not available in their country.
Anes came home from Kosevo hospital after 110 days, on medication for the seizures, but which serve only to lessen them ever so little. The family wondered what would come of their son. What could they do to help him, with so few answers available? Luckily, they would soon find some answers through Asmir, Anes’ adoring uncle.
Asmir Dzebic happened to be a young college student in Bosnia, who, as such, had access to the Internet. In an effort to help his family and the nephew he had grown to love and adore, he did some research on the Internet and reached out, half-way around the world, through a website he found. That website was for The Hemimegalencephaly Family Support Network, created by Holly Paauwe, parent of an American child born with hemimegalencephaly. That was the beginning of the end of loneliness for the Dzebic family and the start of a dialogue between Holly and Asmir that would quickly lead the family to more detailed information about hemimegalencephaly, a better understanding of the treatment needed, and most importantly, a reason to HOPE.
The first contact from Asmir, dated July 14, 2008, read:
“Hello, I'm Asmir from Bosnia and Herzegovina. I searched the net for HME and I came across your page. My brother got a baby on 27.3.2008. But after couple days we realized something was wrong. We brought him to the local hospital and after CT they sent us to the hospital in Sarajevo, the capital of Bosnia. He's still there, the hospital is called 'Kosevo'. He has seizures every day, about 30-15 a day. More then 3 months has past but he's still in hospital. He had several magnetic resonances, and I have complete recording of his brain. It can be seen that his right part of the brain is somehow different from the left one. The doctors gave us notes about HME to study it. What I want to ask is if you could help in any way. I can send you his Magnetic resonance recording so if YOU are a doctor maybe YOU could help. Any help right now is a SO NEEDED. Thank you in advance...I hope to hear from you.”
And so began the back and forth between Holly and Asmir. As their correspondence went on over the next couple of months, Holly would learn that Anes was having anywhere from 20-50 clinical seizures a day. She became more and more bothered that the family did not have the help they so desperately needed for Anes. She wondered what that would feel like as a mother, and it broke her heart. She knew how lucky her daughter had been, all because she happened to be born in America. She felt saddened that this was the only significant difference between Anes and her daughter, yet it made all the difference in the world to their treatment. And it mattered big…in a life or death sort of way. By early October, in an attempt to find real help for Anes, Holly turned to us, her new colleagues at The Hemispherectomy Foundation and the great big heart of co-founder Cris Hall.
As the new Specialty Director for Hemimegalencephaly and Cortical Dysplasia with our Foundation, Holly emailed Cris to see if we could help this family get the treatment their child needed. Very soon, the story of “little Anes from Bosnia” became well known to all of us with the Foundation. We fell in love with his pictures and would speak of him often, yet we weren’t quite sure what we would be able to do from so far away. Knowing that we had no funds, Cris set out to find out how we could facilitate getting this child connected to an experienced medical team in Europe. As early as October, Cris had received the information from a doctor in Bonn, Germany that could possibly treat Anes. Holly was able to forward the information to Asmir, who shared the information with Adis and Aldina. The family made contact with the doctor in Bonn and by January he agreed to treat and operate on Anes, but the cost of the treatment would be about 30,000 euros – a huge sum by most standards, but even more huge by Bosnian standards. And so, as any family would to get their child the help they need, the Dzebic’s began to reach out to family, friends, and anyone willing to help them pull together the needed funds.
As the months passed, Holly kept up with the family via email correspondence with Asmir and reported progress to Cris. When word came in March that the family was still far from having the funds they needed to get treatment in Germany, Cris, Holly and the Foundation team began to worry about how long it was going to take to make surgery happen in Germany and worried about what the continued frequency of seizures would do to Anes and his development while waiting. Feeling a bit powerless, and living half a world away, Cris began to grow frustrated and wondered what else could be done. He began to think of alternatives and discussed them with Holly and the whole Foundation team. In correspondence with Asmir, Holly relayed that our Foundation was looking into alternatives to get Anes the surgery sooner rather than later. With the knowledge that we still did not have the financial means to undertake financing of such a surgery, Cris decided to approach our newly formed Medical Advisory Board (MAB) for help.
On May 29, 2009, Cris emailed all the neurosurgeon members of the MAB with a plea to help Anes. As Cris recalls “As soon as I hit send, the phone rang and it was Dr. Aaron Cohen-Gadol of Methodist Hospital in Indianapolis. Tears were streaming down my face as I listened to him say, ‘I would be honored to do Anes’ surgery.’” As the day progressed, other neurosurgeons called to say they would be glad to be a back up for the surgery. Cris was ecstatic and called to relay the news to Holly and then sent word to Anes’s family. Now, there’s a MAB stepping up for the Foundation it serves and for a child in need!
After a few hectic weeks of planning to make this US treatment possible, the family is scheduled to arrive in Indianapolis on June 24, 2009 - a mere month after Cris sent his plea to the MAB. Making this happen – and happen quickly – was no small endeavor. Dr. Cohen-Gadol went to great lengths to pull both medical and rehabilitation teams together, get the hospital’s approval, and provide the guarantee letter needed for the family to apply for a Visa to travel to the US for medical treatment. The Hemi Foundation team worked to secure lodging, translation services, solicit travel support and prepare for the public relations piece of what is sure to be a news worthy story. A story of COMPASSION, COURAGE, FAITH and HOPE, whose base is a beautiful little Bosnian boy named Anes.
Anes will have his chance at surgery – and a mother, father and uncle can finally find some peace and experience what it means to have “Hope in One Hemisphere”. What does this opportunity mean to a family like Anes’? It is most obvious in the following words of Asmir:
“Hi Holly. I suppose that you know everything that is going on about Anes's opportunity to get to USA. I just wanted to say that my family is so thankful to you and all people that is helping us (Cris and others). My family often talks about you and how you are helping us. Anes means everything to us, and his desease is the worst thing that could happen to us, but with your help Anes has a chance for a better life. Thank you, I hope someday that we will meet in USA or here in Bosnia...you are welcome here forever. THANK YOU. All the best to you and your family...give kisses and hugs to princess.”
In case it is not obvious, let us bear clear. The story of Anes and his family is exceptionally special to us. Looking back, now having learned more about Bosnian culture, we understand even more what a big deal it was for this family to reach out for help. According to Dzermina Cirkic, a Bosnian hemi parent located in California and now our Bosnian liaison, “In my country, you don’t know of anyone who has seizures. No one talks about it. When you’re told your child has this terrible disease, you don’t know what to do because you’ve never heard of it before. Families keep things like this ‘hush-hush’ as it’s embarrassing. This further perpetuates the problem.” Knowing this, we understand even more the importance of our mission to educate and reach out to ALL the people and cultures of the world.
Financially speaking, we recognize that Dzebic will have some unmet needs while here in the US and that Anes will continue to have rehabilitative and equipment needs once back in his home county. As such, The Hemispherectomy Foundation is collecting donations to further assist the family as needed. We are also accepting donations that we can use to build an account that will help other families, like Anes’, that do not have access to this crucial surgery. We will use those funds to help such families obtain the treatment their child needs through an experienced medical center. As thrilled as we are to help Anes, we sadly understand that he is not the only child that needs this help
To learn more about Hemimegalencephaly visit:
Dr. Aaron Cohan-Gadol