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.

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