A moment of happiness through his paces

News 27 August, 2017
  • Vincent Larin

    Sunday, 27 August, 2017 08:00

    Sunday, 27 August, 2017 08:00

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    Maélie waits for a new heart for almost six months. Connected to a machine that makes five times its weight, she and her parents count the days until they receive finally the call as expected.

    The walls of the chamber Maélie, 5 years old, are covered with drawings that her friends have sent. The machine on which the girl is plugged in constantly emits a humming noise constant while she eats sitting at a table for children with their parents.

    “It is like a long quiet river now, but it is exhausting,” says his mother, Caroline Alfaro-Fortier.

    Laugh with Celine

    Since April, the young patient lives at a rate of three doses of pills per day. She suffers from cardiomyopathy, a disease that prevents the heart to function to its full capacity. It is she who has been there for the longest time on his floor of the hospital Sainte-Justine.

    The small family was able to blow for a moment through this event when Celine Dion is coming to visit on Wednesday.

    Maélie did not realize on the time that a famous singer had just entered his room. But no matter, she spontaneously opened her arms to her new friend. They sang nursery rhymes together, to which A mouse green, a favorite of Maélie.

    These 20 minutes were delighted with the little girl, but also her mother, who has no time to breathe for months.

    “It was really a moment of happiness, says Ms. Alfaro-Fortier. Probably it is the only time that I will be able to meet in person. “

    The heart of Berlin

    In April, Maélie was asked a heart of Berlin, which has taken up the baton of his own, too weak. The doctors had then warned that it may have to attendrede six to nine months that a new heart is available.

    But since the situation of the girl was quickly stabilized, the waiting time before getting a new heart is extended. She might now have to wait almost a year.

    Between the clinic of Orthotic where they work to their account, the daily visits to Maélie, domestic duties and their other three children, his parents struggle to catch their breath.

    “It is hard because we must continue to live in the same time,” says the father, Mario Alfaro. There are countless pizzas that one had to buy the other children. “

    “At one point, the doctors have suggested me to start working again because it might still be long,” adds the mother.

    Organ donation

    And a relapse is watching their youngest..

    “Sometimes, Caroline called me at work to tell me that it’s not going well with Maélie and I am overwhelmed by the sentence, but I have to continue, the suppliers do not expect, them,” said Mario. He holds back his tears.

    Even after their daughter has had her new heart, she will need to stay in the house for nearly six months. His mother will be there permanently.

    “It will never be the Maélie of before,” whispers Ms. Alfaro-Fortier.

    In the meantime, the parents want to raise awareness of the importance of organ donation. “Check your cards, if you please, you don’t know, but it could possibly save someone like Maélie. “

    Life for six months in the hospital

    Despite the disease, she eats everything

    Despite his condition, Maélie does not have to comply with any condition to feed themselves. What she prefers above all, these are the chicken croquettes. “When she had a big day, she asks us sometimes if we can go to the Mcdonalds in coming to visit him, says his mother. She also loves seafood like octopus. “Better enjoy it, because once she has received her new heart, Maélie will probably have to follow a very strict diet.

    The school, like other children

    When she will be able to return to school, Maélie will be able to regain the friends she had made during its first month of class. Thanks to a private teacher who comes to see her one to two hours per day, she was able to complete his kindergarten in June. Her teacher is in constant contact with the school of Maélie so that she may make the same exercises and homework that the young people of his age. It is also in her hospital room, she learned to read and write.

    “It’s really good, because when she can return to school, it will have no delay on his comrades,” says his mother Caroline. Maélie will receive a list of school supplies tailored to their needs to begin his first year Tuesday. Just the idea of starting all over school, Maélie squirms in his chair : it has haste.

    Only 1000 hearts of Berlin

    This is an artificial heart for a child who pump the blood from the left ventricle to the aorta to reduce the effort of the damaged heart while waiting a transplant. The heart of Berlin can be of different sizes, and is composed of tubes implanted in the body and which are connected to a pump outside the body. In the case of Maélie, there is a pocket the size of a hockey puck that hangs between his legs. A nurse inspects every four hours to ensure that there are no clots that are formed there. If this were to happen, Maélie could soon undergo a cerebral embolism, which would cause serious sequelae. Until today, about 1000 hearts of Berlin have been used throughout the world to help children with heart problems.