“The device funded by Enfant Soleil has saved Liam from paralysis. Thanks to donations and research, we learn to move forward with the disease year after year,” say Liam's parents.
A challenge-filled start to life
When Liam was born, he had to overcome many challenges. Hypoglycemic and lethargic, he had to be force-fed, undergo two lumbar punctures, and stay in the neonatal unit for ten days before being allowed to go home. At five and a half months, a lump filled with fluid formed on his head, leading him to be rushed to Sainte-Justine. There, doctors discovered a malformation of his vertebrae (cervical spinal stenosis), which would limit his physical activities for the rest of his life, as an injury in this area could have very serious consequences. At the age of eight months, Liam underwent emergency surgery to decompress his spinal cord. During the operation, his parents were comforted by the Enfant Soleil logo on the equipment. Three months later, the genetics team contacted the family to tell them that Liam also had chromosome 16 deletion syndrome. This mutation causes a variety of health problems, including motor delay, autism spectrum disorder, language impairment, ADD, loss of muscle tone, von Willebrand disease (a blood clotting disorder), dysphagia (difficulty swallowing), and even childhood acne. Liam is also being monitored for urinary reflux. Medication helps control his symptoms while awaiting an eventual surgery. Every year, he has follow-ups in several medical specialties (neurosurgery, radiology, dermatology, orthopedics, rheumatology, and physiatry), and everyone around him stays vigilant as he is hyposensitive. Since he does not feel pain, he could easily be unaware of a worsening condition.
Dream big, dare to go further
Despite all his health challenges, Liam never stops dreaming big and shows his determination to outdo himself every day. Equipped with an excellent memory, he is also passionate about geography and does very well in school, in regular classes. “I love hockey, but I can't play,” admits Liam, who dreams of becoming a TV sports commentator, a dream that came true in a way on his first Telethon, when he co-hosted a sports segment as a guest on Salut Bonjour Week-End. Fuelled by his dreams, Liam pushes the limits imposed by his illness. Surrounded by his two sisters and supported by the unconditional love of his family, he proves every day that if you believe in yourself, anything is possible. His parents take nothing for granted and enjoy the present moment without projecting themselves too far into the future.
In this household, where health challenges and medical appointments are omnipresent, connection, love and humor triumph in spite of everything. “You have to learn to open up and accept differences. We hope to raise awareness of this rare disease, make it better known, normalize it and give hope to others in a similar situation”, his parents confide.
– Marie-Pier Cotton, Guillaume Tremblay, Chloé (4 years old) and Rosalie (7 years old)
Liam, an endearing and "ecpextional" young man 😉
That’s what Liam’s teacher wrote under his picture. Liam is an impressive young boy whose determination is sure to inspire you!
