Dare to share the 2% of income tax for Maya!
We have recently met Maya, when her father, urged by the desire to support his child, which from an early age is in wheelchair, contacted us asking for support.
Maya is an absolutely adorable and extremely intelligent nine years old girl, having a warm smile and a strong empathy for the others. With emotion, she came for the first time in March, carried on in the arms by her father, to join the young people with disabilities to the art therapy workshop organized by Derzelas Association. Maya was born with a rare and degenerative neuromuscular genetic disease, Spinal Muscular Atrophy. Due to the genetic deletions, at the cellular level, the SMN protein is synthesized only in a very small amount. This protein has a crucial role in protecting motor neurons. Motor neurons degenerate and can not transmit nerve impulses to the muscles and, therefore, the muscle atrophy takes place.
Maya’s parents noticed early motor delays when she was 6-7 months old. The doctor advised Maya’s parents to be seen by a neurologist, but the specialist opinion was that the girl has only a motor delay. Concerned about her state, when she was 11 months old, Maya`s parents took her back to the neurologist, but after a long time of several medical examinations, the Romanian doctors failed to diagnose the girl. The medical investigations continued also abroad, in Frankfurt, where Maya was diagnosed with SMA – Spinal Muscular Atrophy and the genetic test confirmed this diagnosis. Considering the doctors` advice, Maya began the physiotherapy, massage and hydrotherapy sessions and, up to five years, due to the treatment received, the girl succeeded with support to stand and even take few steps. But, being a degenerative disease, her state progressively worsened and now the girl is immobilized in a wheelchair. Due to the fact that the disease affects all muscles, including the respiratory muscles, several breathing problems have occurred.
For this disease, recently was approved the treatment that stops its progression and helps to the recovery of several motor skills. The drug is called Spinraza (nusinersen) and is developed by the pharmaceutical company Biogen, the cost of this treatment being very high.The treatment consists in the administration of a dose of 5 ml of oligonucleotide cells in the spinal column, which are designed to assist in the synthesis of a greater proportion of the SMN protein. The cost of one dose is $ 125 000 and, in the first year 6 doses are necessary, so the total cost is $ 750,000.
You can support our initiative in order to help Maya to be the beneficiary of this expensive treatment that could restore her mobility, redirecting 2% of income tax towards Derzelas Association. Money raised will be redirected to Maya`s parents to cover a part of the cost of the treatment.What exactly you should do?
1. If you reside in Cluj county- download the 230 declaration from here, fill it in with your data and then resubmit the original document to our address: Republicii Street, No.14/5, Cluj-Napoca
2. If you live in another place than in Cluj-Napoca – download the 230 declaration from here, fill it in with your data and then submit it directly to the ANAF quarter from the county where you are domiciled.
We are extremely grateful that you support us in this charitable action for Maya!