LANA'S LIFE STORY
Our seven-month-old Lana Jovanović suffers from the most severe form of spinal muscular atrophy type 1. It is a rare, progressive and deadly neuro-muscular disease, which leads to the loss of basic vital functions. Lana is among 34 patients in Serbia who have received the drug spinraza, a therapy available at the expense of the state since 2018. Spinaraza slows down the disease and significantly helps, but Lana's parents are looking at the new gene therapy with great hope, recently registered in Europe. It costs $ 2.1 million.
Lana was a happy baby at birth rated ten. Until the second month, nothing indicated that she was different from his peers.
"Well, we noticed that she didn't move her's legs, that her's legs were very immobile and when I put her on her's stomach, I noticed that she couldn't lift her's head off the bed. Those were some of the first signs," says Lana's mother, Aleksandra.
Visits to the doctor started, there were numerous examinations and finally a diagnosis was established. The therapy she received two weeks later and the obligatory exercises five times a day are responsible for the fact that Lana can still swallow and breathe on her own.
Expensive therapy with the drug Sprinraza has been available in Serbia since 2018 at the expense of the state. It slows the progression of the disease, especially if it is applied as early as possible.
"Fortunately, she was born in 2019, so she can ask the state to provide spinraza therapy for Lana. She is also lucky that the drug Zolgensma is available from 2019," says Lana's father, Dimitrije.
It is a new gene therapy, registered in the European Union on May 19. Lana's parents have high hopes for her. At the same time, it is currently the most expensive in the world.
"The drug costs $ 2.1 million. In her case, it would mean that she can develop like any normal child, be able to sit, walk, be like any normal healthy child, and be able to enjoy her childhood." , Dimitrije points out.
The advantage, he says, is that it is given once, intravenously, unlike spinraza, which patients receive directly into the spine every four months, for the rest of their lives and which the state finances until a certain age.
Zolgensma is something new. Lana's parents expect a lot from this therapy, and solidarity from the people in Serbia so that, with over two million dollars collected, they can reach it on time.
"Everyone would do as much as they can for their child. We would dig with our hands and feet, just to come to a solution. Nobody wants to watch their child bedridden," says Lana’s mother Aleksandra Jovanović.
Spinal muscular atrophy
Spinal Muscular Atrophy (SMA) is a rare but progressive and deadly neuromuscular disease. Children with SMA are born without the SMN1 gene. This gene is responsible for the production of certain proteins. The disease is manifested by gradual but progressive muscle atrophy and loss of basic vital functions, such as swallowing, breathing and walking. SMA does not affect brain and cognitive functions.
SMA is classified into four types: 1, 2, 3, 4.
SMA type 1 (Lana's disease) is the most dangerous form in which the disease is noticed in the first months after birth. Since one of the symptoms of this disease is lethargy, there is often confusion and thus misdiagnosis as hypotomy (muscle laziness) which was our case and so we lost a month with wrong diagnosis and every day without a proper treatment is a serious loss in this fight. Lana does not have the SMN 1 gene, but she has the SMN 2 gene and two copies of it, which is standard for type 1. This means that the organism produced enough protein to develop normally only in the first two months. After that, there is a noticeable atrophy, where it is noticed that the child does not move it’s limbs, it cannot hold it’s neck up straight. The next symptom is difficulty breathing and frequent choking during breastfeeding. Children generally do not experience the second year because the atrophy takes over the whole body and they mostly die from suffocation.
Spinraza is a therapy that is currently provided to us by the state, one ampoule costs 90,000 euros and is given every four months by injection into the spine for the rest of the patient’s life. The state pays for the medicine until the patient turns six, which means that every year after that we need to find 270,000 euros for a therapy that keeps Lana alive and does not give hope that she will ever sit, let alone stand independently.
The drug we are raising funds for (ZOLGENSMA) is new and its research is relatively short, but it gives us enough hope that our child will have a chance for a normal childhood.
Through the application of the drug, Lana will receive the primary gene SMN1, which was absent after birth, and thus she will receive the right or sufficient amount of protein for her development to continue normally in the future.
How can you help Lana
Lana’s time is limited. Here condition doesn’t know how much the cure costs and how hard it is to raise the funds that are needed to obtain this cure.
We hereby call all kind people with big heart, who are in a position and willing to help little Lana get the necessary cure, to DONATE. No matter how big or small the donation is, it will most certainly help Lana get close to her goal and soon hopefully raise 2.400.000$ needed.
There are several ways to donate:
For donations in EUR
Aleksandra Jovanovic (Lana’s mother)
Donation for Lana Jovanovic
Dunavska 9, 21299 Rakovac, Serbia
ERSTE BANK A.D. NOVI SAD
CORESPODENT BANK FOR EUR INCOMING PAYMENT
ERSTE GROUP BANK AG WIEN, AUSTRIA
MORE ABOUT LANE'S DISEASE
FROM RTV VOJVODINA BROADCAST
If you have any questions or would like to get in touch with Lana's family in order to get more information about Lana, her disease or any other question that you might have, please fill the form below. Lana's parents will contact you as soon as they can.
Telephone: +381 64 5039501 (CALL, SMS, VIBER)