Mathéo, aged 2 and a half, received a liver and kidney transplant, an unprecedented case in France for a child so young. The little boy suffers from a rare genetic disease that prevents some of his organs from functioning properly.
Relief for his parents. Mathéo, 2 and a half years old, benefited from a double liver and kidney transplant, even though he suffers from a rare genetic disease, last September, a first for such a young child in France. His mother confides Friday, November 1 in the columns of Ouest France.
“We were stunned when we received the call that we had been waiting for almost a year,” Émeline Soullard, Mathéo’s mother, remembers with emotion when she learned that her son had a donor.
Originally from Maine-et-Loire, the little boy was operated on on September 1 at Necker hospital in Paris.
A rare disease that can be fatal
Since birth, Mathéo has suffered from methylmalonic acidemia, also called AMM. This rare metabolic disorder affects the body's ability to process certain fats and proteins and can be fatal.
The first symptoms appeared shortly after the birth of the little boy, in June 2022. When he was only two months old, his kidneys were already no longer working and he had to undergo dialysis every day to keep him alive. But after a few months, it was no longer enough, her kidneys only functioning between 30 and 50%.
Mathéo undergoes emergency surgery in Paris. Three operations are carried out in just 48 hours. To stay with him, his mother stopped working and moved to the capital. A fundraiser was even launched at the time to help finance this move, raising nearly 30,000 euros.
Last January, doctors announced to Mathéo's parents that their son would have to undergo a double transplant. A major operation and even more so for a very young child like him.
13 hours of operation
Special feature: the double liver and kidney transplant must come from the same donor. If a kidney can be donated during its lifetime, it is impossible for the liver. Mathéo's parents cannot therefore be donors.
After months of waiting and anxiety, Émeline Soullard says she received the long-awaited call on August 31. The next day, the little boy was on the operating table “for thirteen hours,” she said.
At the end of the day, his parents visit him. “He was connected everywhere, with big scars and people watching him all the time, it was impressive,” assures Émeline Soullard.
20 medications per day
After spending a month in the intensive care unit and two returns to the operating room, Mathéo is back in the family home. “With his new liver, he can ingest certain proteins,” rejoices his mother.
The little boy is not considered cured yet. He has to take “twenty medications a day,” according to his mother, and continues to go to the hospital every week for monitoring.
“The liver regenerates, it will be fine,” she said. His concern lies elsewhere. “The kidney is a sword of Damocles, we don’t know when his body will have decided that it no longer wants it,” she says.
When that moment arrives, his parents assure that they are ready to donate one of their kidneys for their son, if they are a good match.
In the meantime, Mathéo's parents must still do what they can with a complex daily life. “He is not allowed to use public transport, to see too many people, especially children,” explains Émeline Soullard, who remains cautious.
