Thaïs is almost two. Like most well-loved children, she is happy, laughing as she runs on the beach. But her footprints in the sand, with the toes turned out, tell a different story. Two Small Steps on Wet Sand relates an unacceptable, overwhelming tragedy caused by a genetic disease. A true tale told by a mother, it's the story of a little girl, of family, of friends, and the medical community united to define life by its beauty rather than its length.
On the day Thaïs turned two, her mother, the author Anne-Dauphine Julliand, learned that her daughter, her second child, had an untreatable genetic disease. She was told that it was classified as rare among the rare, a silent disorder that would slowly paralyze Thaïs's nervous system. First the muscles would be affected, then her newly emerging ability to speak would be destroyed, and then her vision would be lost. Finally, over too short a time, a vital function would be suppressed and Thaïs would die. Metachromatic leukodystrophy—MLD—was the diagnosis. No cure existed.
At the time Two Small Steps on Wet Sand begins with Thaïs's diagnosis, Julliand is already pregnant with her third child. Although there is a 25 percent chance that this child also will be born with MLD, Julliand and her husband decide to carry the pregnancy to term. Azylis is indeed born with the same disease; an early graft of cord blood will slow, but not stop, its grim progression.
The disease may be grim, but neither the book nor the people are. Grace, dignity, and most of all love mark the lives of all those involved in the care of Thaïs. Julliand does not play down the pain of the child or the family, or the exhaustion, discouragement, or burden each one carries. Nor does she ignore the confusion of the older brother, the healthy child.
The message of the book is love: the love given, the love received. Julliand promises her daughter a full life—not a life like other children have, not a life of play and movement—but a happy life, a life of love. Through the long months of that short life, love is always present. The family is supported by competent and caring physicians, nurses, and caregivers who do all that can be done to provide comfort and efficient care. Down to the smallest details, they fight to conserve Thaïs's dignity. The family fights to preserve love.
The deepest belief disclosed in this difficult but warming book is one we all need to consider, no matter what our circumstances: "Add life to days when we cannot add days to life."
Two Small Steps on Wet Sand has been a publishing phenomenon in France, where it became a surprise best-seller. After a first print of 5,000 copies in March 2011, this moving memoir has sold over 170,000 copies in one year.