English translation
Dear Amy,
My child is a very lovely baby, until a routine check-up unexpectedly found that she has glycogen storage disease type IA, a rare congenital metabolic genetic disease. Because her body lacks the enzyme that metabolizes glycogen, the liver cannot release blood sugar on its own, and dangerous hypoglycemia can occur at any time; over the long term it can trigger multiple complications such as an enlarged liver, high uric acid, high blood lipids, slow development, and osteoporosis. At present there is no curative drug for this disease. The child must strictly control her diet for life, eat frequent snacks during the day, and must take raw cornstarch at set times during the night to stabilize her blood sugar; the slightest lapse in daily diet or routine can endanger her life.
I am a kindergarten teacher, and also the mother of a child with glycogen storage disease. On one hand I have to look after dozens of healthy children in my class, and on the other I have to keep my nerves taut at all times caring for my sick baby, often weeping silently in the dead of night. Every day I monitor blood sugar at set times, prepare special meals, and get up at set times during the night to feed cornstarch. Life is hard, but I have always been willing to stand up and speak out for families with the same disease, so that more people can see this niche rare-disease community.
We families with glycogen storage disease face many hardships that are unknown to others: awareness among the elderly is extremely low, many grassroots doctors do not understand the condition, and children are easily misdiagnosed and their treatment delayed when the disease strikes; special diets, long-term examinations, and regular medication bring continuous financial pressure; children cannot eat ordinary snacks normally, dine out, or board at school, and are restricted everywhere in going to school or traveling; many parents suffer long-term anxiety and insomnia, bearing enormous psychological burdens. We hope everyone knows that a rare disease is not a “minor illness”—the sick child simply needs long-term, meticulous care, and with standardized management, the child can grow up steadily too.
Amy, facing difficulty head-on is itself an incredibly brave thing. We are all in a contest with unpredictable illness; this road is strewn with fine-grained suffering, but if we persevere we will see the light. May you have the confidence to overcome every difficulty and not fear a rugged road ahead. Every time you rise to a challenge is worthy of applause. I wish you all the best, and that everything comes with a sweet aftertaste.
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, and it's okay to be fragile now and then. Believe that medicine is always advancing; 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.
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; give us more convenience in seeking medical care, going to school, and traveling. I hope rare-disease popular science can be spread, that related medical protection can be improved, and that the financial burden on families can be eased. We are just a group of ordinary people who protect our children with all our might; a little understanding and kindness can hold up the hope of our entire family.
Though there are ten thousand hardships, I will still be gentle and firm, walking slowly alongside my child and guarding every day and every night. Together we look forward to the day when the medicine appears to cure our children!
I have a dream (To glycogen storage disease patients)
I
My body hides a storehouse that cannot be opened,
glycogen piling up, the liver bearing its weight, the bones slow to grow;
in the dead of night I am always scorched by the chill of low blood sugar,
a bowl of cornstarch grinding away countless ordinary dreams of sleep.
Others have their three meals at ease; I keep to a strict diet,
not daring to covet a single bite of sweetness, not daring to let my stomach go empty for half a while.
Illness knocks at the door again and again; the hospital is a place I often go;
the uncomprehending gaze of others falls upon my swollen belly.
A short and small body, bearing a wound I was born with.
II
I have a dream
that the world will no longer be indifferent to the loneliness of rare disease,
that medicine will break through the barriers and find the miracle of a cure,
that the enzyme will awaken anew, and glycogen will break down without hindrance;
that every pair of footsteps trapped by illness
can tread across mountains and rivers, and rush toward the distant four seasons;
no shackle of lifelong dietary restriction, no anxiety of repeated hospitalization,
that every fragile life may be gently treated and known.
No longer must one fight alone through the long grind of the years.
III
Even though the long night before us is cold and illness is as ever,
the dream deep in my heart has never withered inch by inch.
May research break like dawn and dispel the barrier of metabolism;
may all patients who press forward under a heavy load
at last break free from the bonds of illness and grow freely.
I have a dream
of the day the blood flows freely,
with ordinary meals, peaceful sleep, and health year after year.
Glycogen Storage Disease Care Center
June 2026