English translation
Hello, Amy! And hello to all the friends listening to this letter!
I am Zhao Na, from Jinzhou, Liaoning Province, China. My daughter, Miaomiao, is 10 years old this year. On the night of July 10, 2022, she suddenly lost her sight, and then came headaches, a high fever of 40°C, vomiting, and coma—she was admitted to the ICU! A month later she was diagnosed with mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes, with the mutation site A3243>G, known as MELAS syndrome for short! When I heard the diagnosis, I was stunned; my mind went completely blank. I did not know what kind of disease this was, nor how to treat it going forward, and even less did I know that this was a rare disease that could strike at any moment and even be life-threatening!
The attending doctor told us that there is currently no curative medicine for this disease; all that can be done is symptomatic treatment when an episode occurs. In the days that followed, the whole family was in a state of “battle readiness” every day, and I in particular spent each day on edge, because her disease is like a time bomb—she is fine one second, and has an episode the next… always catching us off guard! The child takes large pills three times a day, seven or eight kinds of medicine at each meal. At first she couldn't swallow pills; even drinking a whole cup of water with one pill didn't guarantee it went down—let alone eating a meal, she was full just from taking medicine and drinking water. The child cried while taking her medicine, and I cried too. That feeling of helplessness and pain is truly hard to describe!
She should have been walking into a classroom to study, and should have had a happy childhood playing together with friends, but my darling can only stay at home—not daring to run or jump, unable to play any entertainment with the slightest thrill (such as trampolines, swings, water surfing, and so on). At many children's play areas, we can only stand at the entrance, gazing in with trepidation…
If she can't go to school, we just don't go; if she can't play certain activities, we simply don't play them—none of that matters much. The main thing is that this mitochondrial disease triggered epilepsy. To reduce the seizures, the child has to follow a ketogenic diet, and there are so many foods she cannot eat! Ordinary rice, noodles, ice cream, French fries, drinks, cake, cookies, and so on—she cannot eat any of them. The child often asks me: “Mom, can I eat this? Mom, can I eat it after I get better?” Each time she asks, my heart aches as if pricked by a needle… So many nights have been sleepless nights for me, my heart constantly full of self-blame. Why does fate toy with me like this? Heaven finally granted me an angel after so long (I gave birth to my darling at the age of 40)—why must it break her wings? What must I do to bring back my darling's health…
Having said all this, many people will ask: “What is mitochondrial disease?” What symptoms does someone with this disease have? The answer: the mitochondria are the “energy factories” of the human body's cells. Once mitochondrial function becomes defective, all the organs throughout the body gradually fail from a lack of energy—this is mitochondrial disease, a hereditary rare disease with an extremely high rate of disability and death. And the mitochondrial encephalomyopathy that my daughter has, MELAS syndrome, is the most difficult and complex of all mitochondrial diseases in terms of treatment and drug development. Typical manifestations include sudden stroke-like symptoms (limb weakness, loss of vision), epileptic seizures, migraines, vomiting, and impaired consciousness; it can be said to affect every organ in the body, and can trigger an episode—or claim a life—at any moment!
We are all a group of ordinary parents, yet around us there truly is such a group of forgotten lives. They are enduring the endless torment brought by mitochondrial disease, yet because the disease is rare and complex, they are trapped in the triple plight of difficult diagnosis, difficult access to medicine, and difficult access to support, struggling bitterly in the dark. They are the most fragile part of the rare-disease community; every life is racing against death, and every family is barely holding on at the brink of poverty caused by illness. At this moment, we urgently call on the state to give this niche group more attention and assistance, so that they no longer face illness and despair alone.
For families of mitochondrial disease patients, beyond the illness itself, what is even harder is the dual pressure of survival and treatment.
On one hand, specific drugs are in extreme shortage and are very expensive. At present, there is no targeted specific drug for mitochondrial disease; most treatment drugs are imported or out-of-pocket, not covered by medical insurance. Patients need thousands or even tens of thousands of yuan per month just for medicine, and together with the costs of long-term rehabilitation, hospitalization, and examinations, the annual expenses easily reach hundreds of thousands. For ordinary wage-earning families and rural families, this is an astronomical figure. Countless families are thus bankrupted and buried in debt, falling into the despairing plight of “if you can't afford treatment, you can only give up.”
On the other hand, medical insurance and social relief coverage are insufficient. Although our country has already included some rare diseases in the protection system, the diagnosis, treatment, and medications related to mitochondrial disease are still not comprehensively covered, and critical-illness insurance and medical assistance play only a limited role in backstopping such high costs. At the same time, there are very few dedicated relief funds or charitable resources for mitochondrial disease. Patients' families lack effective relief channels and can only bear all the pressure alone.
Every life deserves to be treated kindly, and every patient has the right to live. Mitochondrial disease patients are not “a niche burden,” but compatriots who need to be protected jointly by the state and society. Here, we make an earnest appeal to the relevant state departments:
Speed up inclusion in medical insurance to ease the burden of seeking care: as soon as possible, include standardized diagnosis and treatment for mitochondrial disease and specific treatment drugs in the national medical insurance catalog and the scope of critical-illness insurance reimbursement, and raise the reimbursement ratio; include mitochondrial disease in the certification of chronic and special diseases, incorporate it into the scope of medical assistance for major and severe illnesses, provide special relief for families in difficulty, and build a solid line of defense against poverty and its recurrence caused by illness.
Improve the diagnosis and treatment system to enhance treatment capacity: establish a national, provincial, and municipal three-tier collaborative network for mitochondrial disease diagnosis and treatment, set up dedicated diagnosis and treatment centers and designated hospitals, open green channels for rare-disease diagnosis and treatment, and achieve early detection, early diagnosis, and early treatment; strengthen professional training for grassroots medical staff, popularize knowledge of mitochondrial disease diagnosis and treatment, and reduce rates of misdiagnosis and missed diagnosis; establish a national registry system for mitochondrial disease patients, ascertain the number of patients, and provide data support for policymaking.
Increase research investment to break through treatment bottlenecks: set up a dedicated research fund for mitochondrial disease, support research in basic medicine, clinical treatment, gene technology, and other fields, accelerate the development of domestic specific drugs and the clinical translation of cutting-edge treatment technologies, promote policy approval of safe technologies such as mitochondrial replacement therapy, and solve at the root the problem of having no drug to cure and treatments that don't work.
Improve the support mechanism to provide all-round care: introduce dedicated assistance policies for mitochondrial disease patients, providing rehabilitation care, living subsidies, and educational and employment support, especially for minor patients, granting long-term care protection; encourage charitable organizations and social forces to participate in relief, and build a multi-tiered support system that combines medical insurance, assistance, charity, and social support, so that patients feel the warmth of the state.
They are children cradled in their parents' hands yet unable to grow up healthy; they are young people who should be enjoying life yet are trapped by illness; they are the pillars who hold up their families yet have been struck down by disease. They have never given up hope of living, yet for lack of national attention and protection, they struggle bitterly in a desperate situation.
A rare disease does not mean being ignored; a niche group needs the state's backstop all the more. We earnestly ask the relevant state departments to attend to the survival plight of the mitochondrial disease community, to place this niche appeal on the agenda of livelihood protection, and to use the sunshine of policy to illuminate these lives trapped by rare disease, so that every mitochondrial disease patient can receive standardized treatment, every family can escape despair, and everyone can have the hope and dignity to live!
Let us speak out together, let love be not rare, and let every life be treated gently!
Finally, my heartfelt thanks to Amy for reading this letter out on the Atlantic, and my deep admiration for the spirit of braving the wind and waves shown by Amy and her team. I wish Amy success in the “human-powered rowing crossing of the Atlantic” challenge, and a safe return!
Kōde Mitochondrial Family Alliance; Miaomiao's mom, a mitochondrial patient
June 21, 2026