English translation
To Auntie Amy, who is conquering the ocean:
I hope this letter finds you well.
When you are in the cold seawater of the North Atlantic, facing the dark night and the huge waves, please know that on a faraway land, a small little life is breathing and holding on together with you.
My name is NONO, and I am 9 years old this year. I am a child with isolated methylmalonic acidemia. This is a rare metabolic disease. Because my body lacks a little helper called “methylmalonyl-CoA mutase,” I cannot metabolize and absorb the protein in all foods—rice, noodles, vegetables, meat, and so on—the way other children can. These delicacies for ordinary people turn into organic acids that pile up in my body, making my blood acidic and my urine acidic, and I often have acidosis. So I have another name too: “Lemon Baby.”
Every mouthful of food I eat has to be precisely calculated and weighed like a chemistry experiment. Every day I not only have to eat specially made low-protein food, but also drink a special formula powder with an almost unbearable taste, and take a lot of medicine on time; Mom is also always giving me injections at home. Even though we all try very hard and are very careful, the buildup of these acids in my body can still damage my brain, kidneys, heart, and nervous system at any time, and may trigger convulsions, coma, intellectual regression, growth arrest, organ failure, and even put my life in danger.
My world is made up of special milk, medicine, and blood-test reports.
For us Lemon Babies, the biggest challenge is not being allowed to get sick. For others, a sneeze might just be a cold, but once we run a fever or have diarrhea, we could develop acidosis and be in life-threatening danger at any moment, and have to rush to the hospital for emergency treatment. We cannot run freely in the sunshine like ordinary children, because the body's “engine” might stop working at any time. Sometimes, watching other children eat delicious food, eat all kinds of snacks that look so tasty, or watching them run and jump, I not only feel envy, but also feel an enormous, tidal-wave-like loneliness.
But, Auntie Amy, when I heard that you are going to row a boat across the Atlantic for 50 days, I thought you were so cool! On the sea you face raging waves, with no supplies and no way to retreat, fighting the wind and waves 24 hours a day in rotation—this fearlessness inspires me to fight the crises inside my own body. You use your hands to row and measure the ocean; I use my will to fight the disease. This makes me feel that although we face different challenges, we are both waging a war without gunpowder smoke.
My mom is Liu Yingna, the head of the Lemon Baby Care Center. She told me that someone as amazing as you is also fighting a rare disease, and that your husband is an even more amazing warrior. We are all “comrades-in-arms” fighting hard. Lemon Babies fight the metabolic toxins in our bodies for a lifetime, just as you fight the wind and waves on the sea day after day; Lemon Babies keep to a restricted diet for life, take medicine for life, and wrestle with illness for life, just as you row, hold fast, and face unknown perils on the boundless ocean. Thank you for crossing the ocean carrying the heartfelt voices of all rare-disease patient friends, and for telling the world the stories we hide deep in our hearts, with no one to listen:
What we need is not only for someone willing to develop a specific drug, but even more for society's understanding of this “invisible disease”—we may look normal on the outside, but inside our bodies we are fighting toxins at every moment. We cannot be cured, but we can be diagnosed early through newborn screening and treated early, and then we will grow up as normally as possible. We need to control our diet for life, but more and more manufacturers are willing to produce special low-protein foods for us, and in the future there may be chocolate, ice cream, and egg pancakes that we can eat… We are small yet tenacious, ordinary yet brave; we all deserve to be gently seen by the world, and we will always have the strength to live well… Your boat may be only 4 square meters, but it carries the hope of connecting rare-disease patients with the real world.
I want to say to you: you are not only a hero on the sea, but also the hero of all of us Lemon Babies. May the wind and waves treat you gently, may your boat sail smoothly all the way, may you fear no raging billows, arrive safely at the far shore, and successfully complete this expedition of speaking up for love and pressing forward for rare diseases!
With respect!
Little NONO, a Lemon Baby
Beijing, June 2026