Serbia: Charity foundations for children with rare diseases
In Serbia, between 300,000 and 500,000 people suffer from rare diseases — all of which require special therapy, which is often prohibitively expensive and only available abroad. Five families with boys suffering from the rare Duchenne muscular dystrophy have taken innovative steps to raise urgently needed funds for their treatment.
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00:00Danko is 13 years old. His greatest dream is to slow the progress of the disease from
00:08which she suffers, Duchenne muscular dystrophy. In Danko's case, swift action is needed.
00:16Duchenne muscular dystrophy is a rare disease that predominantly affects boys. It is characterized
00:22by accelerated muscle deterioration due to a lack of a protein known as dystrophin. Symptoms
00:27typically appear by the age of five. In Serbia, around 200 children suffer from the disorder.
00:34Danko is one of five boys with a unique subtype of the disease. He will also be one of the
00:38first in Serbia to receive an innovative therapy abroad.
00:41These five boys differ in the specificity of the mutation compared to other boys with
00:50Duchenne muscular dystrophy. Some boys already receive therapy in relation to their type of
00:56mutation. These five boys cannot receive any of the innovative therapies that are being
01:02developed in the world. This is a chance that was indicated at the beginning of January,
01:07and they were chosen for this reason, due to the specificity of the mutations they have
01:13on the gene for dystrophin.
01:15The new therapy will cost 1.5 million dollars for all five boys. Unfortunately, the Serbian
01:20state does not cover the costs. But time is of the essence. The money has to be raised
01:25in the next few months because the disease is progressing quickly, and the boys' age
01:29is crucial for the success of the treatment.
01:46The families do all this to slow down the progression of the dystrophy. To speed up
01:51the raising of funds for treatment, five families joined forces and set up the Jedro Foundation.
01:56They also formed the Band 55, which includes 55 public figures, such as musicians, actors,
02:02musicians, musicians, musicians, actors, musicians, actors, musicians, actors, musicians, actors,
02:07musicians, musicians, musicians, musicians, musicians, musicians, musicians, musicians,
02:12which includes 55 public figures, such as musicians, actors, and directors, and launched
02:17a charity campaign with the song Jedro, and the slogan 5x5 with new hope for the world.
02:31There are no centers for rare diseases in Serbia, and many citizens rely on goodwill,
02:36text message donations, or public figure endorsements. Over 1,500 people benefit from
02:41a variety of humanitarian foundations. The Foundation Pokranji Zivot, which means
02:47Start Your Life in Serbian and is based in the city of Leskovac, provides funds for 300 people.
03:07There is a greater response when it comes to treatment, especially when it comes to children.
03:15Although some treatment costs are covered by the state, few details are available.
03:20After numerous phone calls and emails, Serbia's public health insurance system informed DW
03:25that it was currently unable to provide anyone to speak to us on the subject.
03:30For now, the state provides no specific support to children suffering from rare diseases.
03:35Meanwhile, it plans to build a stadium, to host Expo 2027,
03:40and to construct new waterfront housing in Belgrade.
03:44Danko's parents remain hopeful that the state will find a way to help,
03:48and that the necessary funds will be raised in time.
04:05If we have the opportunity to stop or slow down the spread of the disease,
04:12we will do so.
04:15Danko is determined not to give up. He designed the logo for Band 55
04:20and the campaign song performed by the group of renowned artists.
04:24The Ranjelevic family draws strength from its unity.
04:27And Danko is the greatest fighter of them all.