Called the "Father of Modern Genetics," Dr. Jérôme Lejeune discovered the extra gene that causes Down syndrome and devoted his life to treating, caring for and defending the dignity of persons with chromosomal defects.
A few years after his death, on Easter Sunday 1994, a foundation named for him was formed in his home country of France to carry on his work, continuing to care for those with Down syndrome and funding research to find a cure.
The Jérôme Lejeune Foundation, launched in the United States two years ago, held its first public fundraiser June 13, which was attended by his widow, Birthe Lejeune, in the French Consulate in New York City. The headquarters of the foundation is in Philadelphia, with Dr. John Haas, president of the National Catholic Bioethics Center, as chairman.
"It is my hope that the foundation will, in America, be a fitting tribute to him and go all the way toward finding a cure," Birthe Lejeune told the Register.
During her remarks at the reception, she was asked what it was like "living with a saint," as the cause for Lejeune’s canonization has been opened by the Vatican, and he bears the title "Servant of God." With a smile, she replied, "You don’t know you are living with a saint when he is there."
But, she added, she knows that her husband was a man of great charity and holiness.
She recalled that her husband had a heart of love for the weak and forgotten and always welcomed children with Down syndrome in their home.
She also noted that the day of the event was her late husband’s birthday. The growth of the foundation in America served as a great "birthday present" for her husband, she added, and is "a dream realized for me and my family. I have the impression that he is here today with us."
Lejeune was born in 1926 near Paris, where he studied medicine and became a genetic researcher. After identifying the genetic basis of Down syndrome, also called Trisomy 21, because an extra chromosome occurs on the chromosomal pair with that number, he realized that the ability to detect the defect would lead to efforts to destroy children in the womb who carry it.
He was an outspoken opponent of abortion and devoted his career to improving outcomes for patients with Down syndrome, while also seeking a cure. In 1962, he was honored by President John Kennedy for his work on chromosomal disorders, one of many such awards, and he was later named to the French Academy of Medicine. Pope John Paul II appointed Lejeune as the first president of the Pontifical Academy for Life shortly before his death.
Also speaking at the New York reception were Dr. Yvonne Maddox, deputy director of the Eunice Kennedy Shriver National Institute for Child Health and Human Development of the National Institutes of Health, and Dr. William Mobley, chairman of the Department of Neurosciences at the University of California-San Diego.
"Now is the hour for us to do more, not only in research, but in the care, treatment and management" of those with Down syndrome, Maddox said. The institute is named for Eunice Kennedy Shriver, who, with her husband, Sargent, founded Special Olympics and did so much for persons with intellectual disabilities.
Mobley told a story from his days as a medical resident when an emergency patient was brought to him with a case of severe appendicitis. He called one surgeon after another, but each declined to operate immediately. The young patient nearly died after his appendix burst. Mobley realized that the reason the patient was not treated immediately was because he had Down syndrome.
Mobley said that research is at "a turning point" on the treatment, care and eventual cure for Down’s syndrome.
Mark Bradford, president of the U.S. foundation, recalled that Lejeune often said that the only way to save babies with Down syndrome from abortion was to find a cure. He noted that prenatal screening tests were becoming more accurate — and thus more deadly.
Therapeutic treatments are currently being developed that will help improve outcomes for these patients, who will be able to go to college and live longer and more independently, he reported.
In the future, when parents are given a Down syndrome diagnosis for their unborn child, they will also be told how well their child will be expected to do in life, Bradford said.
One of the immediate projects of the U.S. foundation is the publication and distribution of a booklet called A Student’s Guide to Bioethics, which contains color photographs of babies in the womb and explains the many moral issues regarding abortion and reproductive technologies. Two million copies in various languages have been prepared for distribution at World Youth Day in Rio de Janeiro.
These advances are positive for these special individuals, whom Lejeune’s widow described in a touching way at the foundation event: "They are happy. When you tell them to be proud of themselves, they are proud. If you love them, they are happy. When they are happy, they are very clever."
Brian Caulfield writes from