I met Elisenda when I started working in the pharmacy where she's a regular customer. I was always taken aback by how much medication, nappies, orthopaedic material and other items she would buy for a child in her care. Raquel, her five-year-old daughter and friend of all the staff at the pharmacy, was as vibrant and healthy as you'd expect from any child her age.
Over time, our professional relationship turned in to a friendship, which allowed me to get to know Elisenda better. That was when I found out about Andrea, her eldest daughter, who was nine at the time.
When Andrea was born she was a healthy child, whose early abilities and intelligence surprised people and delighted her parents. Then, one night in March, when Andrea was just nineteen months old, the nightmare began. She started suffering from sudden high temperatures, constant vomiting and bad pains in her head and limbs, causing heart-wrenching screams that still echo in Elisenda's head today.
The doctors didn't react in time. They didn't believe a more detailed study was necessary. Elisenda insisted on a daily basis but was met with indifference from the specialists that could have been treating her daughter. At home, the days and nights of hell continued. Andrea was diagnosed with a simple case of stomach flu, the doctors obviously didn't know what was coming.
A few days later, the type 1 simple herpes virus, which causes herpetic encephalopathy, devastated more than 60% of Andrea's brain, necrotising her brain tissue. When the doctors finally reacted, it was too late. On the fifth day after the start of the symptoms, Andrea fell into a coma. The intensive care she received, although given too late, managed to keep Andrea alive.
When Andrea woke up, her parent's dream of watching her grow up happy and healthy was destroyed forever. Andrea was trapped inside her own body, unable to even hold up her own head or express herself to the outside world; from now on, basic grunts would be the only way she had to communicate with Elisenda. She was left with only 10% vision and without the ability to swallow, meaning she would have to bed fed via a catheter connected to a gastric valve which was implanted just days before being released from hospital.
By the time Elisenda and I became friends years later, she had had another child and got divorced. I was fortunate enough to be able to share with her some of the situations she has to deal with on a daily basis and was amazed by her and her mother Esperanza's strength and positivity to make Andrea's life as fulfilling as possible, while at the same time instilling a sense of hope in the youngest daughter, Raquel.
The current government, motivated by the global financial crisis, decided to cut public spending on benefits for families with disabilities. The consequences of these measures are unimaginable and have left Elisenda's family in a kind of hellish limbo.
The day we went to one of Andrea's regular check-ups, the doctors explained that she would need an operation on her spine and hips that year. Both operations could be done at the same time, but Andrea's chances of survival could not be guaranteed. Furthermore, she would need an orthopaedic brace to avoid bone deformity in her feet, something that was not covered by the public health service. On leaving the hospital, I asked Elisenda what would happen if the benefits she had been receiving were taken away and she couldn't afford the orthopaedic brace. “I'll find a way. You know I will.”, she answered.
Barcelona 2011
