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[title] => Lava ima opaku bolest, a treba joj najskuplji lijek na svijetu. Pomozite i vi hrabroj curici!
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"Moje ime je Lava. Bolujem od spinalne mišićne atrofije i trebam tvoju pomoć. SMA je opaka bolest zbog koje ne mogu stajati ni hodati, a vježbam jako puno. Trebam lijek koji će mi omogućiti da sama stojim, radim korake, jače koristim ruke, hodam i pobijedim tremor, skoliozu, kifozu i osteoporozu. Taj lijek se zove Zolgensma, nažalost, najskuplji je na svijetu trenutno. Moje vrijeme curi i imam ga priliku primiti samo sad", piše uz fotografiju nasmijane dvogodišnjakinje s kečkama, piše Jutarnji list.
Njezini roditelji odlučili su ovim apelom zamoliti javnost za pomoć pri skupljanju novca za iznimno skup genski lijek Zolgensma koji je pokazao revolucionarne rezultate, a zaustavlja progresiju bolesti. Iako je uvršten na HZZO-ovu listu posebno skupih lijekova, Povjerenstvo za lijekove ograničilo je njegovu upotrebu na djecu koja boluju od spinalne mišićne atrofije tipa 1. Lava je tip 2 i na njega nema pravo.
Liječenje stoji vrtoglavih 2,4 milijuna eura, a obitelji za sad fali nešto manje od 2 milijuna. Lijek bi Lavi davali u klinici u Los Angelesu. Inicijalni termin za pregled joj je 29. svibnja ove godine, ali vrijeme im nije saveznik. Naime, Lava ima 12 kilograma, a lijek mogu primiti djeca do maksimalno 13,5 kilograma.
Djevojčici je osim primarne spinalne mišićne atrofije dijagnosticirana i osteoporoza drugog stupnja te skolioza i kifoza. Kako kaže njezina mama Petrunjela Petrušić, unazad dva tjedna počeli su joj se kočiti prsti na rukama, budi se usred noći i vrišti jer je ukočena.
"Lava je naizgled zdrava, a iznutra opaka bolest uzima svoje pa tako osim primarne dijagnoze najveće probleme nam zadaje otežano žvakanje i gutanje, skolioza te kifoza. Ustrajnim i upornim vježbanjem se trudimo zaustaviti daljnju progresiju, ali bez lijeka teško da ćemo u tome i uspjeti. SMA je nemilosrdna, a vrijeme je ključan faktor", rekla nam je majka.
Obitelj je, kaže, iznimno zahvalna svakome i na najmanjoj pomoći.
"Neopisivo nam znači podrška ljudi u ovom trenutku. U nevjerojatno kratkom roku smo okupili oko sebe velike ljude. Mali krug velikih ljudi. Zajedništvo koje se stvorilo oko ratnice Lave uistinu ulijeva vjeru da ćemo doći do enormno velikog iznosa. Prije svega nekoliko tjedana činilo se nezamislivo, danas - jedna djevojčica ujedinila je, ne samo Hrvatsku nego i Balkan. Želimo ovim putem zahvaliti od srca na svakom donirano centu! Lavi je jako važan. Hvala Hrvatska, Srbija, BiH, Crna Gora, Albanija. Hvala Europa, hvala Kanada. Još nas dug put čeka, ali vjerujemo da ćemo uz ovakvu podršku doći do cilja", s puno nade govori mama.
Svi koji žele pomoći djevojčici mogu to učiniti uplatom na račun otvoren kod Raiffeisen banke:
Lava Petrušić
IBAN: HR5024840083120778121
Opis plaćanja: za ratnicu Lavu
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Malena Lava treba našu pomoć
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"Moje ime je Lava. Bolujem od spinalne mišićne atrofije i trebam tvoju pomoć. SMA je opaka bolest zbog koje ne mogu stajati ni hodati, a vježbam jako puno. Trebam lijek koji će mi omogućiti da sama stojim, radim korake, jače koristim ruke, hodam i pobijedim tremor, skoliozu, kifozu i osteoporozu. Taj lijek se zove Zolgensma, nažalost, najskuplji je na svijetu trenutno. Moje vrijeme curi i imam ga priliku primiti samo sad", piše uz fotografiju nasmijane dvogodišnjakinje s kečkama, piše Jutarnji list.
Njezini roditelji odlučili su ovim apelom zamoliti javnost za pomoć pri skupljanju novca za iznimno skup genski lijek Zolgensma koji je pokazao revolucionarne rezultate, a zaustavlja progresiju bolesti. Iako je uvršten na HZZO-ovu listu posebno skupih lijekova, Povjerenstvo za lijekove ograničilo je njegovu upotrebu na djecu koja boluju od spinalne mišićne atrofije tipa 1. Lava je tip 2 i na njega nema pravo.
Liječenje stoji vrtoglavih 2,4 milijuna eura, a obitelji za sad fali nešto manje od 2 milijuna. Lijek bi Lavi davali u klinici u Los Angelesu. Inicijalni termin za pregled joj je 29. svibnja ove godine, ali vrijeme im nije saveznik. Naime, Lava ima 12 kilograma, a lijek mogu primiti djeca do maksimalno 13,5 kilograma.
Djevojčici je osim primarne spinalne mišićne atrofije dijagnosticirana i osteoporoza drugog stupnja te skolioza i kifoza. Kako kaže njezina mama Petrunjela Petrušić, unazad dva tjedna počeli su joj se kočiti prsti na rukama, budi se usred noći i vrišti jer je ukočena.
"Lava je naizgled zdrava, a iznutra opaka bolest uzima svoje pa tako osim primarne dijagnoze najveće probleme nam zadaje otežano žvakanje i gutanje, skolioza te kifoza. Ustrajnim i upornim vježbanjem se trudimo zaustaviti daljnju progresiju, ali bez lijeka teško da ćemo u tome i uspjeti. SMA je nemilosrdna, a vrijeme je ključan faktor", rekla nam je majka.
Obitelj je, kaže, iznimno zahvalna svakome i na najmanjoj pomoći.
"Neopisivo nam znači podrška ljudi u ovom trenutku. U nevjerojatno kratkom roku smo okupili oko sebe velike ljude. Mali krug velikih ljudi. Zajedništvo koje se stvorilo oko ratnice Lave uistinu ulijeva vjeru da ćemo doći do enormno velikog iznosa. Prije svega nekoliko tjedana činilo se nezamislivo, danas - jedna djevojčica ujedinila je, ne samo Hrvatsku nego i Balkan. Želimo ovim putem zahvaliti od srca na svakom donirano centu! Lavi je jako važan. Hvala Hrvatska, Srbija, BiH, Crna Gora, Albanija. Hvala Europa, hvala Kanada. Još nas dug put čeka, ali vjerujemo da ćemo uz ovakvu podršku doći do cilja", s puno nade govori mama.
Svi koji žele pomoći djevojčici mogu to učiniti uplatom na račun otvoren kod Raiffeisen banke:
Lava Petrušić
IBAN: HR5024840083120778121
Opis plaćanja: za ratnicu Lavu
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18. svibanj 2024 00:31
