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Volunteer Advocate
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Marilou’s Story

Let me introduce you to Marilou. She’s 6 years old and the youngest member of her family.  She has 2 brothers: Alexy who’s 13 and Thomas who’s 8. She is a little girl who is full of smiles, a real fighter who loves sports. Marilou has cystic fibrosis, a degenerative and potentially lethal disease. Here is a short summary of her life so far.

From the moment of her birth on September 20, 2011, we (Marilou’s parents) noticed that there was something different about her.  Her first 2 months of life were very difficult, for her and for us.  She was awake in our arms at least 12 hours a day, because whenever we put her down in her crib, she would twist and turn cry without stopping.  At night, she wouldn’t even wake up to drink because she was exhausted by how she spent her day.  In November, she contracted a little virus that turned into bronchiolitis.  After two weeks spent in Pierre Le Gardeur Hospital, the antibiotic she had been given simply wasn’t working.  One morning, after choking to the point of turning blue, she was transferred as an emergency to the Montreal Children’s Hospital.  The hospital doctor’s team tried another antibiotic with an equal lack of success.  My cousin, who has a son with cystic fibrosis, contacted us and described to us exactly what we were going through with Marilou, as if she were standing right there.  So I spoke about the case of cystic fibrosis in my family to the medical team, and they began to provide the treatments given to patients with that disease.  After a few days, she improved noticeably, and the verdict was issued a few days before Christmas: Marilou had cystic fibrosis.

Once we had that diagnosis, the drugs and daily care began, and she was finally able to live a somewhat more “normal” life.

We met many times with the hospital’s cystic fibrosis team.  They guided us in her care and treatment and helped us watch over Marilou’s daily life.

In February 2014, Marilou’s health grew worse.  After we tried several antibiotics at home, she was admitted to the hospital for what turned into a 14-day stay.  The doctors decided to give her an intravenous antibiotic.  The stay went well because she reacted very well to the antibiotics and drug treatments.  We were always there for her, Papa during the week and Mama on weekends.

By August 2014, Marilou was already 3 years old, nearly 4.  Mama had the fantastic idea of registering her for figure skating. She ADORED IT!  It was her new passion: she loves music, she adores dancing and on top of that, now she skates. The learning curve was moving nicely along.

Just after Christmas, we were starting to prepare for the year-end show, which takes place in late March or early April.  But surprise!  Marilou was again admitted to hospital in March 2015, while rehearsing for her show.  This admission was followed by 14 days of antibiotics given intravenously at the hospital.  Marilou again responded very well to the treatments, which enabled her to leave the hospital just in time for the year-end skating show.  Having been unable to her choreography on the ice, Mama had her practice right in her hospital room.

Since that last hospitalization, we have been lucky.  Marilou’s health has not deteriorated very much.  We spent a dream vacation in February 2017 at Disneyworld, thanks to the MAKE A WISH Foundation, which granted Marilou’s wash.

In September of this year, she began her first year of school very well.  Unfortunately, she had to be hospitalized in December until Christmas.

For Marilou not to have to spend the holidays at the hospital, and for everyone with cystic fibrosis, help us find a cure: http://bit.ly/2ADWJym