"And they lived happily ever after." These well-known words end many a fairy tale, and if such stories were to continue, we would expect Snow White and Cinderella to be soon surrounded by a brood of perfect children, with beautiful round eyes, voices that could melt any heart and flowing blonde hair, well, flowing black hair in the case of Snow White! But life is not a fairy tale, as one family can attest.

Rossen and Sevda Hristovi, a professional musician and an economist, respectively, began their "happily ever after" in the Bulgarian town of Rousse in 1997, when they were married. Their fairy tale continued when in 1998 they become parents to Emmanuel, fondly called Emko. But at six months old, Emko still could not hold up his head. At nine months old, he still could not sit up by himself. And so began the unravelling of their fairy tale.

"I cried when I first heard the news," says Sevda, "just like any normal mother would."

Medical tests found that Emko had the genetic disease mitochondrial myopathy (MM).

Mitochondria are responsible for producing most of the energy that's needed for our cells to function. This disease can shut down some or all the mitochondria, cutting off this essential energy supply from muscular and neurological cells.

MM has such a complex array of symptoms that some can be so mild as to be hardly noticeable, while others are life threatening.

This disease has twisted Emko's leg muscles, has left him unable to speak and has severely hampered his mental development.

Radostina (Radi) is Rossen and Sevda's six-year-old daughter. "She loves to be held and hugged and generally spoiled," says Sevda warmly. Tragically, Radi, too, has mitochondrial myopathy.

"One cannot express with words the pain that I have felt over Emko and Radi," shares Rossen. "But I am their father and I love them."
Sevda's parents suggest that she place both children in care homes. Her refusal to do so strains their relationship.

"My parents maybe just don't want to have such grandchildren," she says sadly. "But I believe in God and I believe that He is helping us to hold on. And my children need us to believe for them and to fight for them."

And fight they do. Sevda and Rossen are the only ones that look after their children. Three years ago there was overturned a previous government ruling that allowed only one parent to be paid by the state as an official caregiver. Now both Rossen and Sevda each receive the minimum allowance of 180 leva a month to be caregivers to the children.

The children have many needs, including the need for a special adapted bathtub and regular rehabilitation treatments. As well as "special supportive wheelchairs, as ordinary push chairs won't do: the children fall out of them", says Jani Kovacheva, a family friend and now a leading campaigner for the Hristovi family.

A mother herself, it was while looking at pictures of Emko and Radi that Jani was overcome with deep emotion. "I knew then that I had to do more," she says. Jani planned the variety charity concert held in support of the Hristovi family on April 26 at the Central Military Club in Sofia.

The funds raised from the concert are to be used to send the Hristovi family for full genetic testing, in order to find the full extent of the disease. It is hoped that from these tests, doctors will be able to map out a course of treatment for Emko and Radi that will enable them to live fuller lives.

It is admiration for Rossen and Sevda that has spurred the non-profit organisation, the International Women's Club - Sofia (IWC), to support their fund raising campaign.

"We have visited many institutions for disabled children in Bulgaria, where hundreds of children like Emmanuel and Radostina vegetate until they die," shares Marie Halbherr, the charity chairperson of IWC. "And we know how easy it would have been for Rossen and Sevda to abandon their children in such an institution, and how much courage, abnegation and faith it took them to decide to keep their children at home and look after them."

Indeed life is not a fairy tale. It often deals out unimaginable circumstances that torment the many of us who like to ask "why". Rossen and Sevda and parents like them go beyond the whys of life. Their example gives us a glimpse into how life can be deeper, heartier and truer than mere fairy tales.

"When I look at Emko and Radi," begins Rossen, "I see perfect, sunny, unique, smart, loved and loving children. I could carry on, but there just wouldn't be enough time."

For further details on the Hristovi family, log on to www.missionbg.org