“A smile costs nothing, but gives much.”
This proverb perfectly describes Nate, a small French boy born on February 15, 2020. He is known for his laughing eyes and big smile. He inspired his parents to name their association to support him: “Nate’s Smile”. Indeed, even if he doesn’t show it, Nate has all the qualities of a little hero and leads a daily fight against the disease that eats away at him, the Allan-Herndon-Dudley syndrome.
This rare genetic disease affects only 300 to 350 people worldwide and results in Nate having a problem with his overall body development, requiring him to regularly take essential hormones to grow. In addition to intellectual disability and muscular atrophy, he also suffers from hypotonia, which involves a generalized decrease in muscle tone and difficulty holding his head up. However, even though he is forced to lie on his back at home most of the time, this does not prevent him from having fun. Quite the contrary! What does he like the most? Bright objects and sounds of all kinds, even if his main passion is observing the sweet faces of his loved ones! To play at home, Nate can also always count on his dog Sakura, 2 years old just like him. He loves his dog !
Nate’s daily life includes taking strong medication, going to the hospital and rehabilitation sessions. These journeys are made possible thanks to his parents who have adapted their lives to best support their son. His mother Morgane, 26 years old, has stopped working in a company, while his father Victor, 33 years old, now works from home. The couple recently co-founded the association “Nate’s Smile” in 2022 with a very specific goal, as Morgane explains.
“Unfortunately, we don’t receive enough support or financial aid to give Nate access to the best rehabilitation treatments. So we opened this nonprofit to raise funds to benefit Nate and other children like him.”
As Nate has a rare disease, he is receiving. an experimental treatment. Fortunately, geneticists have recently found a dosage for him that causes fewer unwanted side effects. In fact, his parents have noticed many changes in him.
“It’s reassuring because we can see that he can do more and more things. Before, we couldn’t even go for a walk outside because he couldn’t stand the stroller! And today we can. Sometimes, he doesn’t understand his environment, but we manage to experience wonderful moments with him. He loves to laugh and he expresses himself through his eyes and his smile.”
This progress gives hope. New specialists are currently doing research on Nate’s disease. An international Facebook group called “MCT8 AHDS Community” has even been created so that people with the same syndrome as Nate can help each other.
A real ray of sunshine for his loved ones, Nate reminds everyone that even if we go through difficult times, we must keep smiling. Toombow Kids hopes that his story will give courage to children around the world who are also fighting a disease.