For 16 years, young Shalini Yadav has shed her skin every 45 days. A type of genetic curse prevents her from living a regular life in Chhatarpur, a town in the north of Madhya Pradesh in India. In her home town, where she is known as "the human snake", there is no effective treatment to alleviate the effects of such a terrible disease. When she does have all her skin, her entire body is covered in black scales.
Upon entering the gardens of Marbella Club, her smile says it all. Despite having been surrounded by mayhem since her arrival a few days ago, she is excited for the future. Sitting nervously in her wheelchair, she focuses on me with a piercing, innocent look.
After hearing her story, as told by journalist Paco Rego, there is no doubt that the easiest thing for Shalini to do would be to give up. However, while her family had already done this, last month Rego became her guardian angel. After learning about her situation from journalist Sanjay Pandey, he did not hesitate to set a goal which at the time seemed almost impossible.
He wanted to get Shalini to Spain to be treated by the best specialists in the country. "I felt a need, a duty to help a young girl whose situation gets worse by the day," he says. Clearly emotional recalling this story, he adds: "This is what journalism is for."
For months, Rego went to great lengths until he finally succeeded in getting in contact with the International Medical Academy of Marbella. The association, which was founded this year, brings together some of the best doctors on the Costa del Sol in order to help the investigation about the prevention and treatment of illnesses, contributing to the development of the city’s health sector. María Ángeles Rabadán has acted as the intermediary throughout this time. “I have spent weeks not working, devoted to this cause, calling everyone,” she says, convinced that a lot more could be done for her.
The mission began and after a few days, neurologist Miguel Ángel Arráez, president of the academy, assembled a group of specialists whose aim is to shed light on the rare disease of the young girl in order to find a treatment which could give back her life. "We can't turn our backs on someone, no matter how far away they may be. We all felt the need to help her from the outset, whatever the cost," Arráez explains.
Since then, Shalini and her family have been immersed in a long bureaucratic process to ensure that the minor can travel from New Delhi to Madrid by plane, and down to Malaga by AVE. "We have addressed all of the possible obstacles that would stop her from getting to us, all without institutional support," Rego informs. "Shalini didn’t want to live until she found out what we had planned."
At five years old, Shalini had to drop out of school, condemned by those around her. "She watches life go by outside her window, unable to leave her house. In her village, they don’t understand what has happened to her and they don’t want to go near her. It is hard to imagine such difficult and long-term suffering."
When she arrived in Málaga last Tuesday, and after being previously diagnosed through photos, Enrique Herrera, head dermatologist in the Malaga Hospital Clínico and one of the 19 doctors who has volunteered to treat her, gave a definitive diagnosis: "Shalini has lamellar ichthyosis, a non-contagious illness which doesn't yet have a cure as it is such a rare affliction." He explains that it is "a disruption of the metabolic process of keratinisation which is acquired at birth".
Shalini has been accompanied by her father and Vanesa Gil, a flight instructor and another member of the team, who looked after her during the ten-hour flight. Gil made sure that the girl’s skin did not dry up and break throughout the journey. This was the first time Shalini or her father had ever left India. The latter never took his eyes off his daughter for one second. He is clearly pleased, although also stunned, by the wave of support that they have received from Spain, where her story is well-known. The family’s gratitude towards the doctors is beyond words.
Now in Marbella, Shalini will undergo various medical tests to discover precisely the gravity of her illness and to find the optimum treatment for her recuperation. Pharmaceutical company, Farmacéutica Cantabria, based in Santander, has charitably offered to cover the costs of her medication for at least one year, with an eye to doing so for life. "How could we deny someone something like this?" says their representative. "A treatment like this one will not cost more than 40 euros a month, something which her family consider a fortune given that their salaries are fairly low." Until now, the only thing Shalini could do to help herself was to take long baths in water mixed with a homemade remedy which only served to ease her pain.
The medical team insist on the young girl staying in the Malaga Hospital Clínico for 15 to 20 days to keep an eye on her and check her progress. "We will monitor her wherever she goes," the doctor explains. "Thanks to our care, Shalini’s mobility will improve and she will have a better quality of life". Dermatologist Enrique Herrera says that she is doing well and despite the results of some medical tests taking some time to return, the 'acitretin' medication needed to treat Shalini is already available. She will have to continue this treatment over the course of her entire life.
The effort made for young Shalini is further evidence of the power of social media and how it can connect all the corners of the world. "It's a dream come true," journalist Paco Rego concludes, playing down just how much he has done for the cause.