Finding a Lost Voice: A Mother Quest to Find Her Daughter's Cure. Andrea Valle, Mother of 15-Year Old Isabel Diagnosed with Neurodegeneration with Brain Iron Accumulation (NBIA)
Tell us a bit about yourself.
My name is Andrea Valle. I am a widow, and I've lived in Spain for the last twenty years. I am currently unemployed, but I am dedicated to caring for my dear Isabel, my daughter. She was diagnosed with Neurodegeneration with Brain Iron Accumulation (NBIA) last 2016. It is a debilitating and progressive illness of the brain which took Isabel's voice.
My daughter's agony pains me too. Every day, I look at her and muster all my strength to find the courage and persistence to care for her without fail. I am looking for a cure. One day, we will find Isabel's voice and give it back to her.
Tell us about your daughter, Isabel.
Isabel is a very cheerful 15-year-old girl, active and full of energy. She was an athlete: an outstanding football player who had already won three medals. She was the best on the team. They nicknamed her "Ronaldinha" because she was an avid fan of Cristiano Ronaldo, a Portuguese footballer. Isabel was perfect and normal—until tragedy came to us three years ago: NBIA afflicted her, and from then on, my daughter's life was never the same. We were never the same.
How has Isabel's diagnosis impacted the family?
Isabel's diagnosis was emotionally difficult for the whole family. The doctors gave us the hardest diagnosis a mother can receive, and those words, no matter how carefully said and explained, was devastating: they say that Isabel's illness will give her a very short lifetime.
How has life changed since Isabel's diagnosis?
Isabel's life changed dramatically. All her life enjoying in a normal school surrounded by friends and her interests with sports became a humdrum of hospital life: being surrounded by hospital rooms, entrances and exits, and attending a special school for children with motor disabilities.
Tell us about Isabel's bucket list and what she's ticked off so far.
My daughter has only the simplest and most innocent of wishes. In these difficult times, she has never lost her smile and resolve. She wishes to return to her old school. She dreams of playing football again. Amongst other simple wishes, she wants to meet her idol, Cristiano Ronaldo. And perhaps her deepest wish, as we also do, is for her to regain her voice.
How did Isabel get involved in Runway Dubai?
We were watching TV on a typical day, witnessing a fashion show. Isabel started to imitate the girl that was modelling on TV. I was inspired by the idea that Isabel can be the first model with NBIA Disorders.
I got in touch with Modupe Omonze, founder of Runway Dubai. I've known her for ten years now. Modupe and I talked about how Runway Dubai can be an eye-opening event about NBIA, letting more people be informed about the disease as well as the advances of scientific research in Spain. Isabel was featured as the model that opened the Runway Dubai 2019. She was ecstatic, and her smile radiated for everyone to see.
What's your wish for Isabel?
No mother will ever want to see her own children suffer. My deepest and most desperate wish is to find a cure for Isabel and hear her voice again.
What is your message to other parents or guardians looking after loved ones with life-threatening illnesses?
They should stay strong, not only for their own sake but for their children who are suffering. Our children draw their resolve and strength from us. Display courage for them, and assure them that everything is going to be alright.
I also recommend that they also join a group or association of parents who are fighting the same battles as theirs. They can find relief, empathy and understanding from other people, knowing that they are not alone in this struggle.
Parents should also trust science and modern medicine in fighting these debilitating illnesses. We must keep in mind; however, that science must be at the service of our children, and not the that our children must answer at the service of science.
How do you look after your mental health?
It can be emotionally draining to face this kind of adversity, but I try to be grounded. I keep myself sane and stable by talking to my family, especially my mother and brothers, and my own immediate family and friends. I always imagine the moment when we can tell everyone that there is already a cure for NBIA.
How do people find out more about NBIA disorder?
Neurodegeneration with Brain Iron Accumulation (NBIA) is a group of neurological diseases that occur with brain iron accumulation. There are many dedicated resources and websites on the internet about NBIA and current research about it. You may find out more about NBIA research in Spain through the website www.enach.org. Spanish researchers have developed personalised therapies for Isabel, which improved her stability and overall condition.