Last Tuesday we heard the terrible news of the death of Natalia, a seven-year-old girl who had been fightng Niemann Pick C disease for five years – a degenerative and so far , incurable disease. One of the conditions classified as a «rare disease”.
Someone once said that life is not measured by the length of time you are on this earth but by what you do while you´re here and the legacy you leave. This was the first thing that came to mind when I heard the tragic news. Natalia, during her time with us, was a real hero, managing to overcome for more than two years this terrible illness and giving Carmen María – her mother – courage, spirit and strength. Natalia also transmitted a calmness and a patience , as well as many other qualities that have allowed her mother, Carmen Maria, to make great strides towards finding a cure for this awful illness through the association she created. Carmen Maria has been fighting for the life of Natatlia and all children affected this disease by dedicating so much time and energy to organizing a mulititude of events and fund raising activities.
I will always defend the idea that sport, more than offering only entertainment,first-rate performance or competitiveness, gives us values that are vital to society. Qualities such as sacrifice, perseverance, overcoming adversity and physical and mental strength are intrinsic to sport. And these values are far more important than individual sportsmen and they will always prevail. Despite sport often being surrounded by big business, it is these qualities that make sport great and ensure that so many sportsmen will be remembered throughout history.
Carmen Maria exemplifies these values perfectly . A courageoous mum who, between trips to Madrid for Natalia´s treatment , cared for her daughter, organized events to get economic support for the fight against the disease, and most importantly, took all the time in the world to make her daughter tremendously happy.
I was fortunate to meet Carmen Maria personally, while recording a television program in which we were both participating and since then I have spoken to her occassionally and I can assure you this woman is an example. The energy, vitality, strength and joy that Natalia gave her and will continue to give from wherever she is, has made her a very special lady.
Natalia is gone, but her footprint will be indelible. So many days fighting the disease, so much time and money invested in research and so many people that Carmen María has managed to inspire, along with many others fighting Niemann Pick, together I am sure they will find a way to defeat this disease.
For all these reasons I can only think of one thing to say – stay inspired and we will always be grateful the lessons of perseverance you have given us, Carmen Maria. And many thanks for your daily struggle, Natalia.
Rest in peace.