Mey-Lin Gonson
4 years old
Mey-Lin is affected by Beckwith-Wiedemann syndrome, a rare genetic disorder characterized by abnormal growth and an increased risk of tumors. It is often associated with hyperinsulinism, which leads to excessive insulin production and hypoglycemia. Regular medical monitoring is essential.
"We have seen the limits of current knowledge and the difficulty faced by doctors who are searching for solutions to treat rare diseases," says Mey-Lin's family.
Mey-Lin in distress at birth
From birth, Mey-Lin was in distress. Doctors discovered she was hypoglycemic and placed her on an IV drip. In the hours that followed, she was transferred to the intensive care unit at the Montreal Children's Hospital, where a team of specialists was waiting for her, while her mother had to remain at St. Mary’s Hospital. In the weeks that followed, the detected anomalies – Mey-Lin's liver, kidney, and one of her arms being larger than normal – led the geneticists to suspect Beckwith-Wiedemann syndrome, a condition that causes abnormal growth and predisposes the child to develop tumors. Her parents, devastated, were struck by the news in the midst of the pandemic and lockdown. Isolated, both Mom and Dad alternated between home and the hospital to manage daily life and spend time with their two children. Gradually, they came to realize the risks posed by the illness and the challenges ahead.
A difficult medical journey
A first treatment was attempted to stabilize Mey-Lin's blood sugar levels, but the side effects were disastrous, leading to pulmonary hypertension. One evening at home, the little girl was lethargic and in respiratory distress. She had to be urgently hospitalized in the pediatric intensive care unit at the Montreal Children's Hospital. "We called emergency services in panic. We thought we were going to lose her," says Annie. A second treatment was equally ineffective, and the possibility of performing a pancreatectomy (removal of part or all of the pancreas) in Philadelphia had to be seriously considered. The parents were terrified and faced with the urgency of the situation. After discussing with the medical team, they decided to try one last treatment.
A new hope for Mey-Lin
This final treatment included a medication combined with continuous feeding. Finally, the results were positive. A few days later, while her mother held her in her arms and played with her, the little girl responded with her first laugh, a burst of laughter that rekindled all their hopes. The continuous feeding, the constant monitoring of Mey-Lin’s blood sugar, the pump she has to wear in a small backpack, the painful gel injections she receives every four weeks, the oncology follow-ups because they have to be on the lookout for tumors that may develop, and the anxiety that comes with waiting for results: life is not easy for the little girl and her family. But Mey-Lin is thriving and seems to have adopted her family’s philosophy: to move forward no matter what.
"Every donation helps make life a little easier and more 'normal' for sick children and their families. Every donation allows us to learn, laugh, and play. Making a donation is thinking about the future."
– Annie Sechao, Olivier Gonson, and Quentin (7 years old)
Mey-Lin's story: moving forward no matter what
