You can save Elena's life
English
Elena is my goddaughter and a beautiful 2 year old girl from Serbia, who may get a chance to live a normal life, if we all help!
She was born with alpha-mannosidosis, an ultra- rare genetic disorder, characterized by an inability to properly break down complex sugars in the body's cells. The accumulation of sugars affects many of the body 's organs and systems, including the central nervous system. Elena already shows symptoms, such as muscle weakness (still not walking properly), speech impairments, delay in motor skills development, cataracts and immune system deficiency. Without your help, this lifelong multi-systemic progressive disease may lead to intellectual disability, hearing loss and skeletal abnormalities. Overtime, it can affect ALL of her organs and therefore be life-threatening.
As alpha-mannosidosis* occurs only in 1 of 500 000 births, there is not much research done so far.
In 2018, the first enzyme replacement therapy called Lamzede was approved and introduced to the certain markets. Since it is not authorized in Serbia yet, Elena's parents bring her once a week to Bratislava, where she receives this therapy via intravenous infusions. At the moment, only therapy costs them 2000eur per week. The bigger she gets, the more it will cost.
However, this is only helping her to function better- it is not healing her illness.
In order to cure Elena, her parents were advised by world-leading scientists in alpha manosidosis that Elena should as soon as posible undergo a bone marrow transplant. Her parents found a children’s clinic in Italy who would be able to perform this procedure.
As this medical treatment is highly expensive, I kindly ask you to donate as much as you can.
Elena's health insurance is not covering any of this expenses and therefore she relies on the help of good people.
“We can't help everyone, but everyone can help someone."
Thank you very much!
Best regards,
Lidija
Srpski
Elena je moje kumče i lepa dvogodišnja devojčica iz Srbije, koja može dobiti priliku da živi normalnim životom, ako svi pomognemo!
Rođena je sa alfa-manozidozom, ultra retkim genetskim poremećajem, koji karakteriše nesposobnost da pravilno razgrađuje složeni šećer u ćelijama tela. Akumulacija šećera utiče na mnoge telesne organe i sisteme, uključujući centralni nervni sistem. Elena već pokazuje simptome, poput slabosti mišića (još uvek ne hoda pravilno), oštećenja govora, kašnjenja u razvoju motoričkih sposobnosti, katarakte i nedostatka imunološkog sistema. Bez vaše pomoći, ova doživotna multi-sistemska progresivna bolest može dovesti do intelektualnih smetnji, gubitka sluha i skeletnih abnormalnosti. Prekovremeno može uticati na SVE njene organe i samim tim biti opasna po život.
Kako se alfa-manozidoza javlja samo na 1 od 500 000 novorodjencadi, do sada nije urađeno mnogo istraživanja.
2018. godine odobrena je prva enzimska terapija nazvana Lamzede, koja je uvedena na odobrena u odredjemim zemljama. S' obzirom da još uvek nije odobrena u Srbiji, Elenini roditelji je jednom nedeljno vode u Bratislavu, gde ovu terapiju prima intravenskim infuzijama. Trenutno ih samo terapija košta 2000 eur nedeljno. Što veća postane, to će više koštati.
Međutim, ovo joj samo pomaže da bolje funkcioniše - ne leči njenu bolest.
Da bi izlečili Elenu, vodeći svetski naučnici za alfa manosidozu savetovali su njene roditelje da se Elena što pre podvrgne transplantaciji koštane srži. Oni su pronašli dečju kliniku u Italiji koja bi mogla da izvede ovaj postupak.
Pošto je ovaj medicinski tretman veoma skup, ljubazno vas molim da donirate koliko god možete.
Elenino zdravstveno osiguranje ne pokriva nijedan od ovih troškova i zato se oslanjamo na pomoć dobrih ljudi.
„Ne možemo svima pomoći, ali svako moze pomoći nekome.“
Mnogo vam hvala!
Srdačan pozdrav,
Lidija