Let's give Danya a chance to survive!

Danechka Golubov is an eight-year-old Kharkov citizen with a diagnosis of spinal muscular atrophy: SMA. This short word in the press is usually followed by long seven-digit numbers – the cost of drugs for SMA is estimated in the millions. Some states allocate funds for the treatment of their citizens from this rare disease, but most patients (including Ukrainians) have only hope for international programs from drug manufacturers (they regularly "raffle off" a number of doses on the basis of a lottery principle) and charitable donations.

But collecting, for example, $ 2.5 million to pay for Zolgensm could take many years. And the disease progresses: in a person with SMA, muscles weaken every year, until those which are responsible for the respiratory system fail.

When Danechka was born, both doctors and parents rejoiced at the birth of a healthy baby. But at the age of 10 months, the neuropathologist wrote in Danya's card: a syndrome of tonic disturbances. The pool and massages did not help: the baby still did not start walking on his own. Mitochondrial dysfunction was revealed at the Kharkov Genetic Center. Daniil was prescribed a lot of nutritional supplements, but there was no stable improvement, and after chickenpox, his muscles weakened even more. The doctors advised to check Danya for SMA. They passed the analysis at the Russian center for a panel of muscle diseases – and his mother jumped for joy: a negative answer came.

But myography revealed a lesion of the anterior horns of the spinal cord, and this is a symptom that almost unambiguously indicates SMA. This means that we need to look for a genetic mutation in the best laboratories.

In Danya's medical card  "SMA" was written down based on the results of myography – why then pay for the services of expensive laboratories? The fact is that if the diagnosis is confirmed by genetics, Danya will have a chance to get a drug worth a fabulous amount, free of charge from manufacturers. Without confirming the diagnosis, he has no hope of getting better.

Now Danka is 8 years old, although he is developed by 5. He weighs 13 kg: due to metabolic disorders, food is poorly absorbed, he has to take special food. Danya writes with mother's help, sits in a corset, stands worse and worse, does not hold his head well, can drink on his own from a plastic mug one-third full – he is not able to hold a heavier object.

The boy is homeschooled, he studies with the help of his mother and visiting teachers, loves English very much (he perfectly remembers words with the help of the application), plays on the tablet, watches his favorite bloggers.

"Anything for you" his mother says, she is looking for funds and pays for examinations and tests, the services of rehabilitation therapists, speech therapists, buys special meals and food supplements. The dad was "lost" from the family when Danya was 3. He does not pay child support. Mom works as a cleaner twice a week, while grandmother sits with Danka.

Mom cannot raise such money on her own to pay for genetic analysis, the amount is too high for their family.  Daniil and his mother hope for your support, because thanks to the right diagnosis, they will have a chance to receive free drugs.

Let's give Danya a chance to survive!