“My daughter could lose her hands”

An image of Dunia provided by her family.
An image of Dunia provided by her family. / SUR
  • Dunia's family have searched for somewhere that is willing to conduct complex limb-saving operation since 2011

  • The father of Dunia, a young girl with butterfly skin syndrome, requests respect and attention for the condition

Born with a rare genetic condition called Epidermolysis Bullosa, Dunia's life has never been easy. EB, also known as 'butterfly skin', causes the skin to be extremely fragile.

According to medical evidence gathered by Debra, a charity raising funds and awareness to help “butterfly children”, the condition manifests itself in the form of blisters, ulcers and sores on the skin. Infections caused by alterations to the skin can pass through the blood to the heart or other organs.

Since she suffers from respiratory issues and various other problems, Dunia needs daily medical attention and constant treatment in order to ensure that she lives a normal life.

Another complication brought about by this illness is that the skin can start to grow over the fingers, restricting movement and stunting muscle and bone growth. This means that sufferers could lose their hands.

In order to avoid irreversible damage, Dunia's father Carlos has been searching for a hospital that is willing to operate on her since 2011. “My daughter could lose her hands forever,” he explains.

The surgical procedure has been passed up by most medical centres. “First, the children's hospital put us on a waiting list, but once they had decided to operate on her, they quickly changed their mind. The hospital did not want to be in charge of such a complex case.”

From there, the family from Alhaurín de la Torre began a tour of Spain in search of a solution that is yet to be found.

After Seville's Virgen del Rocío hospital rejected their case, Carlos and Dunia travelled to Vall d'Hebron in Barcelona, who promised to treat the child. “In May 2017 we gave them the tests they asked for and they told us that they would seek advice in order to evaluate the situation.” Time passed and nobody called. When the hospital finally did make contact, they told the family that they did not have the right team of doctors at their disposal to take on Dunia's case.

Upon the recommendation of other patients with the same condition, Carlos decided to try his luck at La Fe hospital in Valencia. After a long period of consideration, they finally decided to set a date for the operation. There was just one problem. “They wanted to operate on her in the middle of summer, which would be unfeasible since the high temperatures can make treatments last for months and cause serious infections. This might just worsen Dunia's situation,” he said.

Carlos, who is used to fighting for his daughter's rights, begged that the hospital consider a different solution.

“They told me I was ungrateful, even after the doctor herself had said that the initial plan would have had severe side effects.”

The case remains on hold at La Fe in Valencia, with small hope for a possible new date for the operation. Carlos is conscious of time running out. “It's been a long while since Dunia has been able to move her hands very much at all.”

Dunia, who is already 15 years old, is aware of the seriousness of the situation. She can't brush her hair or pick up a piece of cutlery. “There are days when she can't even hold a pen at school,” said her father.

After so many years of fighting alone, Carlos no longer asks for help. “All I want is respect. Respect from the public health services for my daughter and others who suffer from this condition.”

There's still time, but the clock is ticking. With every day that passes, the prospect of Dunia keeping her hands becomes increasingly improbable.