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Our history making the change
We help improve the education of many children.
I always knew he had the most giving and kind soul, and even though he went through so many difficult times, his biggest pleasure was helping others. It was not easy for him to live with a disease for 14 years, especially one that reminded him almost every 4 months that a new operation or treatment was needed.
He was born in Boston in 1996 and his first tumor was found when he was only 9 years old. He was diagnosed with Lipoblastoma, a benign fatty tumor disease. We still don’t know what caused him having it but we assume that he was born with it. Little by little the tumor started growing, until suddenly, when he was 9 years old, he felt sick and we did an x-ray on him. We were all surprised to discover a large mass covering almost all his left lung.
Emmanuel was operated on Sloan Katherine Cancer Center and was diagnosed with a Lipoblastoma. We were told to do a 6-month check up to make sure there was no recurrence, we did and every- thing looked good. We then moved to Germany and decided to make a year check up. To our surprise we found a new tumor, this time on his right lung and this is when we were told that he had now Lipoblastomatosis, recurrent tumors.
We still don’t know what caused him having it but we assume that he was born with it. Little by little the tumor started growing, until suddenly, when he was 9 years old, he felt sick and we did an x-ray on him. We were all surprised to discover a large mass covering almost all his left lung
No one knew at that time the amount of tumors he would have, in fact they expected it was going to end soon, but suddenly we were facing a new tumor extraction operation every 4 months. They were appearing in different spots in his lung (in between his lung and lung cavity). I must admit that the first couple of years I was keeping a count of the number of tumors he had, but I believe when it reached 20, I stopped counting.
When he was a teenager Emmanuel decided to keep his situation quiet and only very few knew the gravity of his disease. At school we spoke to the teachers to keep this private, since there were times he needed to miss classes for long periods of time while he was getting an operation or treatment.
He usually told his friends he needed to fly to Peru for personal reasons, because he didn’t want to be treated differently and especially didn’t want his friends to feel pity for him. Many times I thought it was a mistake of him to keep this a secret, I thought he would feel better opening up maybe to a friend, but I respected his wish and today I feel that he made the best choice.
The first couple of years he underwent multiple operations and treatments, around 3 times a year and his recuperation after a major thorax operation, for example, was unbelievable, he would stay around 5 to 7 days in the hospital and then return back to his normal life.
Throughout fourteen years Emmanuel underwent chemotherapies, cyberknife interventions, radiotherapies, tomotherapy, proton therapy and numerous experimental medications. This continued until he was 23 years old, and after years of treatment on December 2018 his diagnosis changed into an aggressive Osteosarcoma which appeared in his spine. On March 11, 2019 he passed away.
He learned to read his body so well, that he really didn’t need an MRT to confirm when a new tumor appeared. His neurosurgeon knew that as well, and whenever he received an email from him, he simply organized an emergency MRT to confirm the location of the tumor and program an immediate operation. When he turned 18, the tumors started to appear in his spine.
We had been able to control the tumors that appeared in the lungs and left eye through operations and radio- therapy treatments, but when they started to appear in the spine, things got complicated.
He had a total of 13 tumors in his spine and underwent 12 neurological operations, as well as a tomotherapy treatment around the spine that was able to give him a 10 month tumor free break. It still amazes us to think how his body worked, he would arrive so many times to the hospital in the last years, almost in full paralysis and after 5 days of operation he returned back home walking.
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If you wish to make your donation through Electronic Bank Transfer, the data is as follows.
Andre Soulier Account Number: 1 0056325 00 BLZ: 790 300 01 IBAN: DE36 7903 0001 1005 6325 00
BIC: FUCEDE77XXX Bank:Fürstlich Castell´sche Bank