Eight -year -old Matic is already in America, he will soon get a cure
Eight -year -old Matic Žontarwho has Duchenno’s muscle dystrophy, has already taken the necessary tests in the United States, where he will soon start treatment with genetic therapy abroad, confirming that he could receive treatment, William Julian said. In the middle of last month they are after four months of collecting campaign came up to the destination and raised two million euros for treatment.
Matic, who has a severe rare genetic disease that causes muscle decay, traveled with his parents to treatment at Nemours Children’s Hospital in Florida last week. The next day after his arrival, he also performed a special laboratory test to check the possible presence of antibodies. This week, however, he has already received a final confirmation on the basis of testing results that he could receive the aforementioned therapy.
« We have succeeded, Matic will receive healing and our gratitude and joy are simply boundless, » said his parents Tadej and Ziva, among others. “Although we have done everything that has been in our power in recent months to protect the nut from infections, we were still a little on the thorns. Matic passed this test last fall when we first took him to the US, but the test had to be repeated because quite a while had passed in between. Our dreams came true, Matic won.
Matic, who has a severe rare genetic disease that causes muscle decay, traveled with his parents to treatment at Nemours Children’s Hospital in Florida last week. Photo: William Julian Society
Only now can we really take a break, behind us are really very demanding, but at the same time very beautiful and heartfelt months. At the same time, we want to thank all the people who contributed the donation for the nut again with all our heart, who, with their great heart, allowed us to now receive this medicine, which is in urgent need and which is the only hope for his future, « they said.
Matic was born with a very cruel and devastating rare genetic disease of Duchenno’s muscle dystrophy, for which there was no cure until recently.
The disease causes an unstoppable dying of muscle, so patients can become nailed to a wheelchair at ten years. They then lose other movement skills and become practically paralyzed from the neck down. As the disease also affects the respiratory muscles and heart muscle, patients have increasing problems with heart and respiration, so the disease succumes sometime after the age of 20, the William Julian said.
Last year, in the United States, they approved the first Genetic medicine for this disease for all children, which is not yet approved in the EU, which means that it is only available self -paying. Therefore, Matic’s parents started a collection campaign last December with William Julian, with a collection campaign, with which they raised over two million euros in four months, The rest of the treatment cost will be winging parents with their savings and loans.
Will receive the medicine within two to four weeks
“Matic will now receive the medicine somewhere within two to four weeks, as the manufacturer must still deliver it to the hospital, and then will have to remain in the US for three months under the supervision of doctors. It will be together in the US for four months and will come back to Slovenia just during the new school year, so everything is going very well, « his parents say.
« We keep in mind with Matic and keep our fists for him so that the entire treatment will be as easy as possible, » he said Gregor Bezenšekfounder of William Julian Society.
/s3/static.nrc.nl/images/gn4/stripped/data133536761-02d904.jpg|https://images.nrc.nl/sbayH2Godc0UgUYqy-s_UuSa3ng=/1920x/filters:no_upscale()/s3/static.nrc.nl/images/gn4/stripped/data133536761-02d904.jpg|https://images.nrc.nl/4CxkR_Aon--5R84ZlEiFIRxibnw=/5760x/filters:no_upscale()/s3/static.nrc.nl/images/gn4/stripped/data133536761-02d904.jpg "Move on to the housing market: ‘You have to tempt the elderly to leave their big house’")
