A helping hand for genetic disorder patients

People with genetic disorders often require special care and expensive medical treatment. Funding is not always available. But ordinary people are often ready to help.

Thirteen-year-old Vanya Adamov is learning to play the guitar, is fascinated with Mark Twain’s Tom Sawyer and hangs out online for hours. In other words, he’s like any other teenager.

He also has a rare genetic disease – adrenoleukodystrophy (ALD) – that causes progressive brain damage, eventually leading to death.

His mother Maria says Vanya takes 14 different medicines every day. When he became blind Maria quit her job to take care of him.

Having lost her first son to ALD, she is taking no chances this time.

On New Year’s Eve Vanya’s mother decided to ask for help.

“I just can’t give up. What kind of mother would give up? The disease is treatable and I have to do whatever I can to help him live,” Maria says.

After Vanya’s story was published in a newspaper, his mother was amazed at how many people showed they care.

“It’s not only about money but about giving him a feeling that he’s not alone and people are interested in him,” says Katya, a donor.

But there are those who need a great deal more.

The Odoevsky orphanage in Russia's Tula region is home to children with severe genetic disorders.

Because of limited space at other institutions, many stay until they become adults.

The orphanage’s director Aleksandr Novikov says next year government support is going to be cut by 30 per cent.

“Philanthropy has gathered pace in recent years – and most help comes from common people who don’t have much. It’s sad that Russia’s rich don’t bother,” Aleksandr says.

The suffering of so many in Odoevsky orphanage could be alleviated with simple surgery. But despite the country’s vast reserves of oil and gas, officials say there aren’t enough resources to help every child in need.

There’s no cure for ALD. But Vanya is better off than most and is still able to fight the disease.

His mother is still trying to collect 30,000 euros needed for Vanya’s next operation.