5-year-old Ada Loshi needs your help

Doctors in Kosovo and Albania failed to establish diagnosis, in Turkey she was diagnosed with rare Spinal Muscular Atrophy (SMA) SMN1 and SMN2.

This is a genetic disease that causes progressive neuro-muscular disorder, which affects muscle - controlled nerve cells.

No treatment, symptoms of this disease begin to appear before or after the sixth month and continue to deteriorate muscles and loss of muscle tous. Without proper treatment, the condition of patients with this disease deteriorates to the total lack of movement, breathing difficulties,” - family members report

According to them, the only treatment of this disease so far is possible through the Nusinersen (Spinraza), created by the biotechnology company Biogen. This is the first and only therapy approved by the FDA (United States Food and Drug Administration Agency) in December 2016. The price of this drug is too high.

Treatment with this drug should be started as early as possible with 4 initial doses (12 mg/5 ml), on zero day, 14, 28 and 63. Then continue the holding dose every four months to improve the situation.

The first year of treatment is 676 thousand 864 euros, and in the second year 338 thousand and 432 euros.

This disease is not addressed in Kosovo.

The family has so far covered all expenses for Ada, but now it is impossible to provide financial means for the purchase of injections, as their costs are too high.

So they ask you for help and support to enable Ada to receive this therapy, as this is her only hope.

Any kind of help on your part is hopeful for us.

Raiffeisen Bank Kosova

Njomza Rukovci

Bank Account: 1501140001210485

SW IFT code: RBKOXKPR

Tel: +383 44 777 652

All those who want to contribute to Ada from countries outside Kosovo:

Raiffeisen Bank Kosova

Njomza Rukovci

SW IFT code: RBKOXKPR

IBAN Account Number