Beyond our common sense, handicapped children are shining brightly

The following episode of Charles de Gaulle and his daughter Anne has reminded me of a family, two borthers and their mother, whom I happened to care for at the outpatient clinic. It was in 2001. I can't remember exactly how old those boys were. The elder was in the mid of an elementary school, possibly, around 10 years of age. He was already diagnosed, with typical synptoms developed, as Duchenne type muscular dystrophy (DMD). DMD is an autosomal dominant hereditary disease with gradual onset of muscular weakness at several years of age followed by mental retardation later on and eventually turns out fatal in their tenth or twenties. The younger boy has occurred partial palsy of limbs with a noticeable mental retardation then.

The younger boy was examined for the diagnosis at a medical school hospital and turned out to be another DMD. His mother has calmly told that result to me at the outpatient. Always wearing smile on face, she never got excited. She won't scold her sons whatever they did. It was me who got shocked to hear that but she has never been upset but stayed calm with that smile. Her smile was not superficial but came out of her inner. Despite of her and family member's hardship, she remained distinguished and always smiling. I am sure she has had conflict in her mind regarding her sons' illness. She seemed to have accepted their fortune as it was. So courageous from our common sense.

In my career as a pediatrician, I have been on charge of the mothers with congenital disease or herditary progressibe illness like this DMD. If not all, but most mothers were eagerly raising their children. Living to the fullest they could. It was always beyond understanding with the usual common sense. Children are a kind of alter ego for mothers. They must be hope and joy in life. Having children with such serious illnesses won't make themselves depressed. But, together with the children, they were shining in life as if their children were the origin of light. 

As if the parents, most notably the mothers were living the most brilliant moment in life with their handicapped children. The children in absurdity from our common sense seemed to make them radiate brightness all around. It was often an overwhelming phenomenon even for me.

It was one of such unforgettable cases for me. Soon they have moved to another area and won't come to see me at the clinic. Hopefully, the brothers are getting better with the most modern "anti sense oligonucleotides therapy" for DMD, which was not available those days. I only wish them peaceful and happy days. 

This is the story of de Gaulle, the famous general in WWII and later the president of France with his daughter Anne.

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　"Instead of hiding his daughter with Down syndrome, Charles de Gaulle raised her proudly, and she became the heart of his life.

When Charles de Gaulle died in 1970, he made a quiet request that surprised many. He did not want a grand state funeral in Paris. He asked to be buried in the small village of Colombey les Deux Églises, beside his daughter Anne. For him, that resting place mattered more than any monument.

Anne was born on New Year’s Day in 1928, the youngest of three children. She had Down syndrome, a condition surrounded by fear and misinformation at the time. Doctors and society often blamed parents and urged families to hide children like her from public view. For families of power and status, sending such children away was considered normal.

Charles and his wife Yvonne refused. They raised Anne at home with her brother Philippe and sister Élisabeth. There was no secrecy, no shame, no separation. She was simply their daughter.

To the world, de Gaulle was distant and unyielding. A leader shaped by war, discipline, and command. But inside his home, Anne revealed a side few ever saw. With her, he laughed freely. He sang songs, told stories, and played games. Friends noticed that the man who rarely showed emotion softened completely in her presence.

He called her my joy. Anne asked nothing of him except love, and in that simplicity, he found peace. She was never treated as fragile or inferior. She was respected fully, included always, and loved without condition.

That love did not end within the family. After the war, Charles and Yvonne founded the Fondation Anne de Gaulle. They turned a château into a home for young women with intellectual disabilities, many of whom had been abandoned. At a time when support barely existed, they chose action over silence.

Anne’s life was short. She died of pneumonia in 1948, just after turning twenty, in her father’s arms. In his grief, de Gaulle whispered that now she was like the others, finally free from the limits the world had placed on her.

After her death, he carried her photograph everywhere. He believed her presence protected him, even during an assassination attempt years later. Whether faith or fate, he never doubted her importance in his life.

Charles de Gaulle found his deepest calm not in leadership or victory, but in loving a child the world did not understand. His family showed that dignity is not about ability. It is about how fiercely we choose to care."