English translation
I. About glycogen storage disease
My daughter, a lively and lovable little girl full of curiosity about the world, was found to have abnormal liver function during a check-up when she entered kindergarten at age 3. A follow-up examination then found her liver to be enlarged, and she was diagnosed with glycogen storage disease type VI (GSDVI), a rare congenital metabolic genetic disease.
Simply put, her body lacks a key enzyme—liver phosphorylase—which means the liver cannot normally break down glycogen to release glucose. This means her ability to regulate blood sugar is extremely weak, and she faces the risk of hypoglycemia at any time. Over the long term, it may trigger complications such as an enlarged liver, developmental delay, and muscle weakness. At present, there is no curative drug for this disease. The child must strictly control her diet for life, eat snacks at set times, and take raw cornstarch over the long term to maintain stable blood sugar.
As a mother, I once thought my daughter's childhood would be the simple joy of running, playing, and sharing snacks with friends. But glycogen storage disease has made all this extraordinarily difficult—she cannot casually eat a piece of candy, cannot miss a single snack, cannot stay overnight away from home, cannot sleep a complete night's sleep the way we do…
II. About myself
I am a mother of two children. My eldest is already in the fourth grade of primary school, and my second is the girl chosen by glycogen storage disease. I live in Xi'an. Before my child was diagnosed, I worked a busy job at a company—fast-paced and high-pressure—but at the time I felt that this was just how life rushed forward. After the diagnosis, I switched to a relaxed job at a state-owned enterprise; my income is less, but I have more time—I need this “relaxation” to take care of my family. Monitoring blood sugar at set times every day, preparing special meals, getting up at set times during the night to feed cornstarch—these fine and precise tasks fill my daily life.
III. About our glycogen storage disease family community
We families with glycogen storage disease face many hardships unknown to others:
Awareness is extremely low, and misdiagnosis is frequent. Many grassroots doctors have never even heard of this disease, and when the child's condition flares up, it is often misdiagnosed as ordinary hypoglycemia, hepatitis, or other diseases, delaying the best treatment opportunity. We have seen too many families move from hospital to hospital before diagnosis, going through a long and anxious wait.
Continuous financial pressure. Special diets, long-term blood sugar monitoring, regular examinations, raw cornstarch, and other daily expenses, together with the costs of repeated hospitalizations, are a burden even for an ordinary family. What is even more frustrating is that many treatment and care costs are not covered by medical insurance.
Life is restricted at every turn. The child cannot eat snacks normally, dine out, or board at school; going to school and traveling both require meticulous advance planning. Every time we go out, we must carry a glucometer, cornstarch, and emergency food with us. Other children can run freely, but our child must be on guard against a sudden attack of hypoglycemia at all times.
Parents bear enormous psychological pressure over the long term. On so many deep nights, I set an alarm and get up to feed my daughter cornstarch, watching her sleep be interrupted—both heartbroken and helpless. Long-term sleep deprivation, anxiety, and uncertainty about the future are like an invisible string, taut in the heart of every parent.
But we want everyone to know: a rare disease is not a “minor illness,” and children with glycogen storage disease are not so “special” that they cannot live normally. They simply need more meticulous management, and more understanding and inclusion. With standardized care, the child can grow up steadily too, and can have a wonderful life of her own.
IV. What I want to say to Amy
Hello, Amy.
When you decided to paddle a kayak across the Pacific alone, I knew that you had already chosen a road few people take. This road is lonely, long, and full of the unknown—just like the challenges we rare-disease families face every day.
But facing difficulty head-on is itself the greatest bravery. We are all in a contest with unpredictable fate; this road is strewn with fine-grained suffering, but if we persevere, we will see the light. When you feel weary out on the vast sea, please think of us families who are likewise fighting illness on the land—your courage is also giving us strength.
May you have the confidence to overcome every difficulty and not fear a rugged road ahead. I wish you all the best, and that everything comes with a sweet aftertaste. When the Pacific wind blows across your oars, please remember that in faraway Xi'an, China, there is a mother and her daughter cheering you on.
V. What I want to say to patient friends and family members around the world
To all patient friends and to all parents walking alongside us:
We do not have to shoulder all the exhaustion alone. Illness brings much helplessness, but we have never been fighting alone.
Take good care of yourselves; you don't have to force yourselves to be strong all the time, and it's okay to be fragile now and then. After weeping in the dead of night, when day breaks we must still stand up, prepare the next special meal for our child, and monitor the next blood sugar reading.
Believe that medicine is always advancing. From gene therapy to enzyme replacement therapy, the steps of research have never stopped. Hold on to every bit of daily caution, and the days will slowly get better. We accompany one another and warm one another; the future will surely hold more hope.
Please remember: we are not “fighting against” our children; we are, together with our children, gently fighting against the imperfections of this world.
VI. What I want to say to society
I hope society can leave a little more inclusion and understanding for the rare-disease community.
Please do not look at special children with strange eyes. They may look a little different from other children—a slightly bigger belly, a slightly shorter stature, unable to eat the snack you hand them—but they equally long for friendship, long to be accepted, and long to have a childhood in which they are not treated differently.
Please give us more convenience in seeking medical care, going to school, and traveling. A quiet place for a snack, an understanding that allows carrying special food, a moment of kindness free of strange looks—all can let us feel the warmth of this world.
Please popularize rare-disease knowledge, improve related medical protection, and ease the financial burden on families. Rare-disease patients and families are just a group of ordinary people protecting their children with all their might. A little understanding and kindness can hold up the hope of our entire family.
VII. What I want to say to myself
Though there are ten thousand hardships, I will still be gentle and firm.
I am a mother, a wife, a daughter, and also the one who sets an alarm and gets up in the dead of night to feed cornstarch. I may get tired, I may feel anxious, I may occasionally doubt the future, but I will not give up.
Walking slowly alongside my child, guarding every day and every night. Together we look forward to the day when the medicine appears and cures the children. Until then, I will be her most solid backing and her most patient gardener, so that in my garden she too can bloom into her own flower.
With respect,
A mother of a child with glycogen storage disease
June 2026