Labdaringas 5km Bėgimas Justui Rudokui paremti/Charity event
Event on 2015-09-20 14:00:00
Rugsejo 20d Londone organizuojamas 5km begimas Justuko gydimui paremti. Smagu tai, kad prie musu renginuko prisijungs ir pats musu herojus Justas su mama, tuo paciu mus palaikys ir su mumis pabendraus. Justukas tures proga pakeisti aplinka, susitikti su savo palaikymo komanda ir zinos, kad yra zmoniu/draugu, kurie ji palaiko ir linki pasveikti. Tie kas begti negalit, bet norite prisideti prie paramos prasome aukoti nesvarbu kurioje salyje Jus bebutumete. Daugiau informacijos apie Justuko istorija rasite cia: http://m.delfi.lt/sveikata/article.php?id=68342862 Justas had been genetically tested for suspected muscular dystrophy. While awaiting the results his mother tried to remain hopeful –perhaps the results would show a relatively mild form of the disease, such as Becker muscular dystrophy. Unfortunately however on the 27th of November, it was with a heavy heart that the doctors were forced to confirm the harsh diagnosis – Duchenne muscular dystrophy. Duchenne's muscular dystrophy is an inherited genetic disorder linked to the X-chromosome. It affects roughly one out of every 3600 -6000 boys. The first symptoms – are clumsiness, snagging, tripping and instability, but doctors are usually not consulted until it becomes difficult for a child to climb stairs or stand up from the floor. As the disease progresses walking becomes more and more difficult and a person’s gait becomes reminiscent of a duck’s waddle. The muscular weakness spreads quickly throughout the body, causing curvature of the spine to develop and eventually leading to difficulties in breathing and heart activity. The average life expectancy of a person suffering from Duchenne muscular dystrophy is 25. Over the last 3 years Justas has had to undergo surgery on his Achilles tendon just to allow him to continue to be able to walk, and even though this problem has recurred in his other leg he is no longer strong enough to go through another operation as, at this point, any further surgery would leave him wheelchair-bound. Trying to find information about how to treat Duchenne disease is usually the same as punching a wall. There is no known effective treatment for arresting the progression of Duchenne muscular dystrophy. Patients are usually given Prednisone which slightly increases their muscular strength and helps extend the time they can walk for. However, according to the doctors Justas’ mother was in contact with a new drug, called Drisapersen, has recently been developed in the United States, and is due to go on sale in February of 2016. The drug company has officially announced that treatment with this new drug would cost about 200 thousand Euros for the first year of treatment, but this cost should decrease in later years. Please, if you feel anything for this boy and his family make a donation. Even the smallest amount will help and will be remembered and appreciated by the Rudokas family forever.
Enfield, United Kingdom