Tribute to Alexia

Almost all the stories that appear on your pages are about "solidarity, fight, love, and survival, as it should be. The principal goals of the Foundation are the diffusion of knowledge and information regarding the disease, and to give hope and spirit to all those who are fighting for their lives against this cruel illness. However, there are also stories of fight, love, and dreams that do not end well", explained Albert Schoenenberger, father of Alèxia and member of the Foundation.

 

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Alèxia, with her Dad.

Altough her story is sad and does not end well, it shows that we will continue to fight so that one day leukaemia will be a curable disease in all cases. She fought like a champion but unfortunately Alèxia, the daughter of Albert, could not survive the illness.

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"Alèxia, died a year and a half ago after failing to survive a bone marrow transplant from her brother Pau. Alèxia had been diagnosed with acute myeloid leukaemia and was treated in the Sant Joan de Déu Hospital in Barcelona", explains Albert. "Sant Joan de Déu is known as "the house of one hundred eyes", according to Tina Parayre, coordinator of the Volunteer department at the Hospital. This name has developed because inside the rooms there are not patients, but many sick children, some of whom are seriously ill. The children look hopefully out of the window each morning and they feel loved and well treated, they feel like a part of the hospital, of a big family, and they feel almost as if they are home".

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After almost half a year of intense chemotherapy, Alèxia returned home at the beginning of 2008. She celebrated her 13th birthday and rejoined her school, dedicating herself to her studies with renewed strength, devotion and excitement, in order to make up for the time she had lost (despite never losing contact with the school whilst in the hospital). Four months had passed when she suffered a relapse of her illness. She was preparing to go to summer camp and had planned a summer of film after having passed the first grade of the ESO.

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Following several failed treatments, at the end of the year she transferred to the Vall d'Hebron Hospital to undergo a hematopoietic transplant from her brother Pau. Although Alèxia had the fortune to have a brother who was compatible, she could not survive the transplant and died as a result of a general infection.

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"Alèxia always showed a clear determination to live. Always with a smile and always with a desire to study, read, play, and live in the moment. She was an example to us all in survival, love and strength. Obviously we faced very difficult moments, which were painful and terrible, but my wife and I believe that on many occasions, it was her who motivated us in the most intense and anxious months, much more than we motivated her. We loved her and supported her with all our strength and in Sant Joan de Déu we feel at home. We felt supported, understood, and motivated in the fight, always with a realism and professionalism, but also with lots of love, by the medical team such as the ward nurses, day hospital nurses, hospital volunteers and also by the AFANOC support team".

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"It is an unknown world, the world of childhood cancer, a world that it is better not to know but unfortunately it exists. Luckily, there is an army of people dedicated to a work as difficult as this, dedicated to the fight against oncology diseases such as leukaemia. It is an invisible world, often rarely know or even unknown", affirmed Albert.

"And when my voice is silenced in death, my song will speak in your living heart".

With this statement from Rabindranath Tagore we want to pay homage to Alèxia and all the children who, despite their fight, are unable to overcome leukaemia. We must not forget the stories without a happy ending, like Alèxia's. Instead we must be encouraged to continue fighting together to find a definitive cure for leukaemia and to help patients enjoy a better quality of life during and after their illness.

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Become a member of the cure for leukaemia and other haematological malignancies, HERE

Find out more about bone marrow donation, HERE

Webpage updated 12/05/2016 15:26:29