For little Anika - Za malu Aniku

--- Scroll down for Serbian/ Srpski u nastavku ---


I would like you to meet Anika, a baby girl from Serbia, and the daughter of my friends Ivanka and Goran. Anika might be little but her fight is big.  Anika was born with the most serious form of spinal muscular atrophy (SMA1). In her case, the illness principally affects smaller muscle groups which cause her serious difficulties with basic physiological functions such as breathing and swallowing. As a consequence, Anika’s life is in constant danger and the time is her biggest enemy. 

 Anika is full of life. She is a fighter that sparks joy regardless of all the problems that she has faced in her little life. Despite her weak body, her inner strength amazes everyone she meets. Anika deserves a chance to live, as much as all other children do. But Anika is losing the fight against time. 

The only chance for her to be stable, to breathe, and to swallow independently is a gene treatment called Zolgensma. The cost of this treatment is 2.1 million euros, an amount hard to comprehend for most of us but one that becomes possible to achieve if many of us act together!

I am kindly asking you to help Anika in any way that you can, by donating (even the smallest amount will make a difference!) or by sharing this call.  Together, we can create a chance for Anika to live!

Please, let’s stand up for her!

Thank you very much! <3

Here is the link to a FB page of a charity initiative launched in Serbia 

Be sure to read Anika’s story, in the words of her mum:

My only child, my biggest love, and the meaning of my life is slowly losing her strength to live. Unfortunately, as time goes by, Anika’s breathing and swallowing are getting weaker. Each day,  more devices and more medical help are needed to keep her alive. Every day is a fight. A fight for air in her lungs, a fight for every movement of her body, a fight for a smile, for joy, a fight to make every moment with her special, because we don’t know what tomorrow holds. But, there is hope! In May this year, a gene therapy Zolgensma has been approved in Europe that could help Anika breathe independently and regain her strength to speak and eat.

Anika was born as a healthy, strong baby, with strong reflexes and a grade 10. It couldn’t have been any better. On a regular medical checkup, 5 weeks after her birth, her doctor tested her reflexes and we have noticed that Anika’s reactions were not as strong before. The doctor told us that Anika is a lazy baby and that we shouldn’t worry about it. However, we knew that she was strong after her birth, so strong that nurses complimented her about it. Therefore, a couple of days later we decided to go to the hospital and have a more thorough check. After a week of different diagnostic tests, such as MRI, brain scan, different metabolic and genetic analyses, Anika received a diagnosis that we had never heard about before. A rare, progressive, and terminal neuromuscular disease that affects 1 in 10.000 babies. Its name is spinal muscular atrophy, SMA type 1. 

Most of the babies with SMA 1 do not live until their first birthday. Almost none until their second. SMA is a rare disease in which a body lacks a gene that produces a protein necessary for activating motor neurons. When they do not receive the protein, these neurons that are in charge of transmitting impulses to the muscles, die out. Consequently, without the impulse from the neurons, the muscles remain passive and collapse. The atrophy starts with large muscle groups, arms, legs, and neck. After some time, it progresses to smaller muscle groups in charge of the vital functions of swallowing, breathing, or coughing. Death was inevitable, and until recently there was no cure. 

But Anika was lucky enough if we could speak of lack among babies that are born with this diagnosis, that she was born at the time when something could be done. 

The existing evidence so far supports the efficiency of newly approved gene therapy Zolgensma on the entire body, including the breathing and swallowing muscles that are getting very weak in Anika’s case. Zolgensma is a one-time treatment, that is received through an injection. With that one injection, Anika would receive medicine that could “correct” the gene that produces a protein that Anika’s body is missing to stay alive. 

We have tried to get this treatment in all the ways we saw possible. We have tried to sign up for randomized controlled trials in earlier phases of the development of Zolgensma, to relocate to a different country, to ask for the support of different medical experts, to apply for a lottery organized by the company that produces the treatment but none of it worked. In the meantime, we fought many battles to keep Anika alive, to ease her symptoms, to protect her weak little body because even the most benign infection could be fatal for her. The doors to the treatment remained closed. Each time when one door closed, we persisted and tried to open another one. However, in spite of all the efforts, we still didn’t get through and got her the much-needed treatment. Now, we are attempting what seems to be impossible - to fundraise 2.1 million euros to cover the costs of the Zolgensma treatment. Initially, we thought that this was the least feasible option. Now, it is the only option we still haven’t tried. 

We would use the funds raised to get Zolgensma and cover the medical expenses of a three-month-long hospital stay.

I am terrified by the thought that I haven’t done everything I could to save my child, one precious and innocent life. This is the feeling that I go to sleep with and wake up to. I wish Anika could get her chance to have a long and happy life. I wish she could have the highest quality of life she could have. I wish she could go from the isolation that she lives in due to the high risk of not surviving a viral infection. I wish she could spend time with other children, play outdoors and cuddle animals. I wish her lovely smile would come back, the one that is now hidden behind weak face muscles. I wish she could start talking and start asking thousands of questions that I do not know how an answer to. I wish she could try her mum’s pancakes and her dad’s meat specialties. I wish her life could be as rich as much as she enriched ours. Please help us. Please help Anika.

I am sure that in 10 years from now there will be no more children with the symptoms of SMA. The science and the medicine are progressing so fast that soon children with such a diagnose will be able to have a healthy, normal life. Unfortunately, we are not there yet. At this time, when Anika is in need of the treatment, gene therapy is still hardly accessible. Anika deserves a chance to live, as much as all other children do. She deserves a chance. Anika is full of life. She is a fighter that sparks joy regardless of all the problems that she faced in her little life. Despite her weak body, her inner strength amazes everyone she meets. She uses all her strength to bring joy to our lives, to listen to music, and to smile whenever she can.

I have never thought that I could have a baby who is so terribly ill. I have never thought that this fight would become our life. I have imagined that there would always be signs or some evidence in family history that would prepare people for a possibility of such a diagnosis. Now I know that this diagnosis is much less rare than I would have ever thought. This is Anika’s fight but this is also a fight for all other babies with SMA and the babies that might still be born with it. Anika and other children like her, that are currently fighting to receive gene therapy, are paving the road for children that are yet to be born. They are raising awareness about this horrible disease and the necessity of enabling gene therapy to every child in need. The more evidence there is for positive effects of the treatment now, the more probably this treatment will become the standard for treating SMA. By supporting Anika in her fight, you will also contribute to the fight for other children with SMA to have an easier road to the treatment and easier childhood.
Let’s create the future together.! For Anika! And for the children who are yet to be born! <3

-SRPSKI-

Želela bih da upoznate Aniku, malu devojčicu iz Srbije i ćerku mojih prijatelja Ivanke i Gorana. Anika možda jeste mala, ali je njena borba ogromna. Anika se rodila sa najtežim oblikom spinalno muskularne atrofije (SMA1). U njenom slučaju bolest se naročito odražava na sitnu muskulaturu izazivajući ozbiljne teškoće sa osnovnim životnim funkcijama kao što su disanje, kašljanje i gutanje. To znači da je Anikin život u stalnoj opasnosti i da je vreme njen najveći neprijatelj.

Anika je puna života. Ona je borac koji donosi radost uprsko svim nedaćama koje je u njenom malom životu prate. Uprkos slabosti tela, njena unutrašnja snaga pleni. Anika zaslužuje šansu da živi, koliko i sva ostala deca. Ali, Anika gubi bitku sa vremenom. 

Jedina dugorčna šansa da Anikino stanje postane stabilno, da može da diše i guta samostalno je genski tretman Zolgenzma. Cena tretmana je 2.1 milion eura, suma koja je nezamisliva za većinu od nas, ali koja može da postane dostižna ako mnogo nas uradi po nešto.

Zato bih želela da vas najlepše zamolim da pomognete Aniki, donirajući koliko god da ste u mogućnosti (i najmanji doprinos znači)  ili tako što ćete podeliti ovaj apel. Naša pomoć može omogućiti Aniki da živi dugo i da uživa u svom detinjstvu!

Hajde da je podržimo u njenoj borbi!

Hvala vam od srca! <3

Ovo je FB stranica fondacije koja je osnovala fond u Srbiji za prikupljanje pomoći za Anikino lečenje 

Pročitajte Anikinu priču ispričanu rečima njene mame:

Moje jedino dete, moja najveća ljubav i smisao mog života polako gubi životnu snagu. Na žalost, kako vreme odmiče, Anikino disanje i gutanje su sve slabiji i potrebno je sve više aparata i pomoći da se Anika održi u životu. Svaki dan je borba. Borba za vazduh u plućima, borba za svaki pokret, ali i borba za osmeh, radost i da svaki zajednički trenutak bude lep i poseban, jer ne znamo šta donosi sutra. Ali nada postoji! Krajem maja, u Evropi je odobrena genska terapija Zolgensma, za decu ispod 21kg, koja može da pomogne Aniki da prodiše punim plućima i da povrati snagu da jede i govori. 

Anika je rođena kao zdrava, jaka beba, sa snažnim refleksima i ocenom 10. Bolje nije moglo biti. Na pregledu, pet sedmica nakon rođenja, lekar je testirao reflekse i primetili smo da Anika ne reaguje kako bi trebalo. Nakon mnogih dana u bolnici i različitih dijagnostičkih pregleda  - ultrazvuka mozga, magnetne rezonance, metaboličkih i genetskih analiza, Anika je dobila dijagnozu, za koju nikad ranije nismo čuli. Retka, progresivna i terminalna neuromuskulatorna bolest sa kojom se rađa 1 od 10.000 beba – zove se spinalna muskularna atrofija, ili skraćeno SMA, tip 1. Većina ovih beba ne doživi svoj prvi rođendan. Drugi rođendan, gotovo nijedna. SMA je retko oboljenje gde slabljenje počinje sa velikim grupama mišića kao što su ruke, noge, vrat, ali posle nekog vremena atrofiraju i mišići za gutanje, kašljanje i disanje. Smrt je bila neminovna, a nade do skoro nije bilo. Anika je imala sreću, ako se to može reći za bilo koga sa ovom bolešću, da je rođena u vreme kada postoji nešto što može da se uradi. 

Dosad prikupljeni podaci o genskoj terapiji Zolgensma snažno ukazuju na efikasnost leka na celo telo, uključujući i mišiće za gutanje i disanje koji kod Anike najslabiji. Zolgensma se prima jednokratno, i Anika bi na taj način injekcijom dobila "novi gen" koji će od tada proizvoditi protein koji joj nedostaje za život. 

Probali smo da dođemo do terapije na sve načine koje smo videli kao moguće. Probali smo da se preselimo u drugu zemlju, da se prijavimo u grupe za testiranje Zolgensme, da tražimo podršku različitih stručnjaka, da se prijavimo na samilosni program i lutriju organizovanu za gensku terapiju… i svuda su nam se zalupila vrata. U međuvremenu smo vodili brojne borbe da sačuvamo Anikin život, da nađemo najbolje načine da joj olakšamo simptome, da je sačuvamo od infekcija jer za njeno nejako telo i najmanja infekcija može da bude fatalna. Svaki put kad su nam se zalupila jedna vrata, probali smo da otvorimo druga. I pored svih napora, do sada nismo uspeli da dođemo do leka. Sada hoćemo da pokušamo da uradimo nezamislivo, da skupimo 2,1 miliona evra za terapiju u inostranstvu. Iako nam je to izgledalo kao opcija sa najmanje izgleda da uspe, sada izgleda kao jedina koju nismo probali.  

Prikupljeni novac bi se iskoristio za kupovinu leka Zolgensma i troškove tromesečnog lečenja u inostranstvu.

Plaši me pomisao da ću provesti život osećajući da nisam učinila sve što sam mogla da spasim svoje dete, jedan mali nevini život. Sa tim osećajem se budim svako jutro i ležem svako veče. Želim Aniki da dobije svoju šansu za dug i srećan život. Za najveći mogući kvalitet života. Želim Aniki da izađe iz izolacije u kojoj je sada zbog rizika da neće preživeti virusnu infekciju. Želim da se druži sa drugom decom, igra u pesku i mazi životinje. Želim da se povrati njen predivan osmeh skriven iza oslabljenih mišića lica. Želim da propriča i počne da postvalja hiljade pitanja na koja ne znam odgovor. Želim da proba mamine palačinke i tatine pljeskavice. Želim da Anika obogati svoj život, kao što je obogatila naš. Pomozite nam. Pomozite Aniki.

Sigurna sam da za 10 godina, više neće biti dece sa simptomima SMA. Nauka napreduje tako brzo da će omogućiti deci sa ovom dijagnozom normalan i zdrav život u godinama pred nama. Ali Anika se rodila sada, kada je genska terapija i dalje teško dostupna. Anika zaslužuje šansu da živi, kao i sva druga deca. Anika je toliko željna života, borbena i radosna i pored svih problema u svom malenom životiću. I pored slabašnog tela, Anikina vedrina i unutrašnja snaga zadivljuju svakog ko je upozna. Svu svoju snagu koristi da unese radost u naše živote, da se pokreće u ritmu muzike i nasmeje.

Nikad nisam pomišljala da će moje dete biti teško bolesno. Da će ovakva borba biti naš život. Uvek sam mislila da postoje neki znaci, neki podaci u porodičnoj istoriji koji bi pripremili ljude na mogućnost ovakve dijagnoze. Sada znam da je ova bolest mnogo manje retka nego što sam mogla da pomislim. Ovo je borba za Aniku, ali delom i borba za sve nama drage ljude, za drugu decu sa SMA dijagnozom i za decu koja tek dolaze.

Anika i druga deca koja se sada bore za pristup genskoj terapiji, krče put za decu koja dolaze. Podižu svest u državi i društvu o ovoj užasnoj bolesti i koliko je važno da se obezbedi pristup terapiji svoj deci kojoj je potrebna. Ukoliko Anika, i druga deca pokažu na svom primeru efekte koje Zolgensma ima, lakše će se usvojiti genska terapija kao standard za lečenje SMA. Podržavajući Aniku u njenoj borbi, olakšavate borbu dece koja će tek doći na ovaj svet i koja će imati jednostavnji put i lakše detinjstvo. Hajde da kreiramo bolju budućnost zajedno. Za Aniku, i za decu koja tek dolaze.