Abel fighting for his life

Courtesy
The parents of little Abel Tremblay-Pelletier have made the choice to bring it back to the house after a month of hospitalization. On the photo, the mother, Karie-Lynn Pelletier, with his child, in January last at the CHUL, Québec city, before his return to the house.

Stephanie Gendron

Saturday, 10 February, 2018 00:00

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Saturday, 10 February, 2018 00:00

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SAINT-FRANÇOIS-DE-LA-RIVIÈRE-DU-SUD | A child of six months has a genetic condition that has developed in the Kamouraska and that affects only a few people on the planet fighting for his life.

Abel Tremblay-Pelletier was born two months ahead of schedule, on 15 August last. If the pregnancy went well, the birth of Karie-Lyn Pelletier de Saint-François-de-la-Rivière-du-Sud, near Montmagny, is rather poorly conducted.

The small had virtually no vital signs at the birth and began to run a fever four days later. This, however, is clinging to life and a series of tests were undertaken to find out what badly affected, he who was the victim of vomiting and diarrhea and was not gaining weight.

Syndrome-MEDNIK

On 19 January, the parents of the small have learned that he was suffering from the syndrome, MEDNIK. It is a unique disease in the world, of genetic origin, which is developed in the Kamouraska region in families with common ancestors, unbeknown to the parents of Abel. Their child had a one in four chance of being reached.

He has an intellectual disability, a hearing loss, intestinal problems and skin serious, and it is very small. It is also very susceptible to viruses. For the moment, given the severity of the symptoms, doctors assess his life expectancy to a few months.

“We had a roller coaster of emotions until mid-January. This fall, it was even believed that he would not survive and was baptized of emergency. It is a fighter,” she said, which is also the mother of two boys 9 and 4 years old.

Mrs. Pelletier is no longer in a relationship with the father of Abel, Pier-Luc Tremblay, but it deals a lot of the baby with it.

The genetic mutation has been traced in the region of Bas-Saint-Laurent in five families with common ancestors who arrived from France between 1608 and 1759.

Home

Following the diagnosis, the family has made the choice to bring back the small to the house this week after months of hospitalization. “We prefer to be near us to make memories with him. It is ready to do so, leave to slightly decrease its life expectancy, because it is no longer in a sterile environment,” says her mother.

“It is sure that if Abel catches a gastro, it does not pass through. We try not to turn crazy with it, but it is not outside really in the home, it washes really well the hands and you won’t get to visit people who might be sick,” says Karie-Lyn Pelletier, whose daily life boils down to taking care of the little one, but she said that she felt well surrounded and listened to the nurses.

Not hard

They have decided to live day by day and not be baited. Sad reminder of their situation, a sheet indicating their desire that the child not be resuscitated in case of cardio-respiratory arrest is posed in the entrance of the house, in case the ambulance would be called.

“If his body is loose, it is Abel who is going to decide if he wants to continue to fight. My work, is that he is not suffering, while not trying not. I’m not ready to give up, then we go day-to-day,” she says.

Enjoy every moment

“Many times, I’ve rocked and I said to him: “My little man, if you are too tired, we’ll let you go”. In six months he had more than once the opportunity to leave us, but he has not done so.”

“Medicine is not black or white. I thought that if you had pain somewhere, we went to the hospital and had a treatment. This is not it. There remains research to do and there are rare diseases.”

“Every day when I wake up, I thank heaven that he is still breathing.”

“Since he is home, he makes us truly beautiful smiles. Our little delights, we are going to look in these moments. One no longer sees life the same way when one has a sick child.”

— Karie-Lyn Pelletier, the mother of Abel