A 33-year-old father must learn to speak and feed himself again after having his tongue removed for a rare genetic condition that recurred 20 years after his last treatment.
Suffering from Fanconi’s anemia, the same one that killed his brother, Jonathan Massé thought he was out of the woods when, at the age of 10, he underwent a bone marrow transplant and several sessions of radiation and chemotherapy.
Jonathan Massé, 33, will never eat or speak the same way again after having his tongue removed for cancer. We see him here with his wife Maude Michaud and their children Lyvia and Jacob.
But 20 years later, the inherited condition that significantly increases the risk of oral cancer by preventing the production of red blood cells, white blood cells, or platelets, has returned.
“We found out when he cut his tongue with a crisp. It made a crack that never healed and bumps started showing up. It was tongue cancer,” explains his wife Maude Michaud.
never like before
Last September, in a first operation, doctors attempted to remove 75 lymph nodes and 90% of his tongue, which was replaced with tissue from his right thigh.
A recurrence of the disease eventually forced specialists to replace his entire tongue and remove two teeth, half the thyroid gland and part of the gums just five months later.
“We don’t yet know what to expect for the future, he doesn’t speak yet. But it will never be the same again. And he must mourn solid food,” sighs Ms. Michaud, who lives in Saint-Félix-de-Kingsey.
At the moment, the 33-year-old man feeds himself through a gastrostomy and expresses himself through a board and marker he carries with him.
Jonathan Massé has to express himself with a board and a marker for the time being.
However, the risk of this type of disease recurring remains high, despite all the surgeries the young father has endured.
The latter, however, keeps his spirits up during the exams, believing that “the hardest part is behind him”.
“All he wants is to live, for our children. It’s not easy, but he keeps his head up for her,” said Maude Michaud.
Jonathan Massé, 33, will never eat or speak the same way again after having his tongue removed for cancer. We see him here with his daughter Laurence some time before he was diagnosed with cancer.
A fundraiser has also been launched on the GoFundMe platform to help them weather the storm.
An eye condition has prevented Ms Michaud from working since last August while she awaits an eye transplant. And with Mr Massé’s 15 weeks of sick pay ending Christmas week, the couple is left with no income.
“Fortunately we have a family that supports us enormously, but we have to tighten our belts,” explains the family mother.
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