Humanitarian Foundation BUDI HUMAN - Aleksandar Šapić
raises funds for the treatment of Anika Manić (2018).
Anika was born as a healthy, strong baby, with good reflexes and the highest score (10). It couldn’t have been any better. However, during the regular 5-weeks postnatal medical checkup, her reflexes were tested again and the parents noticed that her reactions were not as strong as before. A couple of days later they decided to go to the hospital for a more thorough checkup. After many days in hospital with diagnostic tests, such as MRI, brain scan, different metabolic and genetic analyses, Anika got a diagnosis, which her parents had never heard of before. It was Spinal Muscular Atrophy (SMA) type 1 (the most severe form), which is a rare, progressive and terminal neuromuscular disease, affecting 1 in 10.000 babies. Most of the babies with SMA type 1 do not survive until their first birthday and almost none until the second.
Persons suffering from SMA lack an important gene that produces a protein necessary for functioning of motor neurons, which are in charge of transmitting impulses to the muscles. Without this protein, motor neurons lose their function and die out. Consequently, without the impulses from the motor neurons, the muscles undergo progressive weakening and atrophy. The atrophy starts with large muscle groups, arms, legs and neck. After some time, it progresses to smaller muscle groups in charge of vital functions of swallowing, breathing, coughing that are eventually leading to death.
Until recently, there was no cure or therapy available for the patients with SMA. Anika was lucky however, if we could call a baby diagnosed with SMA lucky, that she was born at the time when something could be done. Since she was 2 months old, she has been treated with Spinraza, a treatment that can slow down the progression of the disease. Unfortunately, as time goes by, Anika's breathing and swallowing functions are weakening and more and more assistance (mechanical and personal) is required to keep her alive.
But there is a hope! Innovative gene therapy, Zolgensma, gives hope that Anika could breathe independently, and regain her strength to eat and speak.
The existing evidence so far supports the positive effects of the newly approved gene therapy, Zolgensma, on the muscles of the entire body, including the breathing and swallowing muscles that are getting very weak in Anika’s case. Zolgensma is a one-time treatment, which is administered through an injection. This unique treatment should be able to “correct” the gene and enable it to produce the protein necessary for Anika to stay alive.
Anika is full of life. She is a fighter that sparks joy regardless of all the problems that she faced in her short life. Despite her weak body, her inner strength amazes everyone she meets. All her remaining strength she uses to bring joy to our lives, to move to the beat of her favorite songs, and to smile whenever she can.
All the raised funds will be used to obtain the Zolgensma treatment and to cover medical and other expenses related to the three-month long hospital stay.
Anika's family appeals to all people of goodwill for help in this endeavour.
For Anika's long and happy life! Let's be humane!
Let's help Anika!