The Ambassadors (July 2005)

"If one has the devotion for a great work, what is necessary?
Patience then a lot more patience "

How a Kuwaiti with Down Syndrome moved his
parents, community, scholars, and me.

Throughout my long career as a paediatrician and geneticist, I often contemplated the epiphanous moments that inspire me to continue in my path. One such moment accented a recent visit I had to Kuwait in March of this year. Ten whole years after leaving Kuwait in January of 1996, I returned for a meeting with many distinguished medical scientists from 29 countries at the first Kuwait International Genetics Conference held in Marina Mall Hotel on March 12-14, 2006. The conference's closing ceremony was the site of monumental extravaganza. Courtesy of a dance, music, and performance troupe of children with Down Syndrome, the work of these researchers was both humbled and inspired by a display of aesthetic beauty and a marvellous ability to overcome adversity. The broad smiles and glimmers filled with hope on the faces of children with Down Syndrome during this display touched me beyond comprehension and helped confirm the real reasons behind genetic research.

By the end of this successful international scientific gathering. those in attendance were awed by the accomplishments of the Kuwait Down Syndrome Society and its founder Dr. Sadika A. Al-Awadi ("Om Abdullah"), the mother of a 30-year-old gentleman ("Omar") with 47,XY,+21. As the international scientists sat attentively, we watched as Omar masterfully played the keyboard, setting the rhythm for the stage performances. Having known Omar since his infancy, the enormity of this image was both profoundly thought-provoking and spectacular. Over the years, I witnessed Omar's victory over the extra chromosome!

Omar Al-Awadi was born in Kuwait on September 15, 1975 to highly accomplished parents. His father, H.E. Dr. Abdul Rahman A. Al-Awadi, BSc (AUB), MD (Aberdeen), MSc (Harvard), FRCP (Edin), is a former minister of Health and Planning in Kuwait and mother Dr. Sadika A. Al-Awadi, MBBCH, DCH (Ain Shams), MD (Dublin), FRCP (Edin) is the founder of the Kuwait Medical Genetics Centre and distinguished geneticist with more than 300 publications. Omar comes from a long line of professionals, among them his four siblings include two engineers, a medical doctor, and a computer scientist. His uncles and aunts are well-known high-calibre professionals, including his aunt, Prof. Badriya Al-Awadi, PhD, a former dean of the faculty of law at Kuwait University.

Like any family with a child with this condition, Omar's parents were distraught by the discovery that their baby had Down Syndrome due to a new mutation. Being strong believers helped them with the psychological coping and to build a strategy to care for their son and other children with Down Syndrome. In 1980, Omar was admitted to regular kindergarten at Rodeit Barda in Hawalli district and he also had private teachers come to his home. By the age of 22, Omar had completed his special school diploma in June of 1997. He had also started his full-time employment working for the Ministry of Social Welfare in a special sheltered workshop producing silk printing material where his salary now is 500 Kuwaiti Dinars monthly ($2000).

Omar's presence in his mother's life inspired Dr. Sadika to dedicate her career towards his betterment and the welfare of those with Down Syndrome and other special needs. When Omar was 12 years of age, his mother defended her MD thesis in the eve of 1988 with a dedication to her beloved child. "To my sincere son Omar with 47,XY,+21 karyotype, who stimulated me to pursue my career as a clinical geneticist interested in the prevention of genetics problems in my country and other countries." In fact, as Dr. Sadika mentioned, "Omar was perhaps the most motivating factor behind my interest in establishing the Kuwait Medical Genetics Centre in 1979." The Center's earliest activities included parents gathering to talk about Down Syndrome and its causes, where to seek assistance, their children's integration into the education system, and their possibilities for the future. "This was not only a first-time activity in Kuwait but was extremely motivating for the parents including myself," she explains. Omar's presence in his parents' life also served as a motivation for the creation of Kuwait Down Syndrome Society and the Down Syndrome Parents League, that to this day provide families with indispensable services.

I was happy to meet Omar again during this conference where I was startled by his accomplishments, well-balanced demeanour, sociability, and gentlemanliness. At one point during my chat with him, he mentioned my son Essam, candidly recalling the time they swam together in Kuwait 12 years ago. Over the years, Omar has become a musician, photographer, and licensed driver. Now, at the age of 30, he is a very pleasant and active, sincere, self-dependent young man with demonstrated signs of leadership and intuition. I was delighted to see Omar pleasantly and elegantly engaging in a discussion I was having with the family's Yemeni driver, Mr. Saleh.

During the last session of the International Genetics Conference, the Kuwait Down Syndrome Society offered an excellent show which presents the integration of children with Down Syndrome in public schools and in all aspects of life. The children with trisomy-21 became members of teams with normal children, singing for friendship, love and peace in a very heart-warming presentation. Omar was the musician for this presentation, demonstrating to all attendees that he has in fact succeeded in defeating Down Syndrome with the help of his family, friends, teachers and community. His accomplishments are reminiscent of two celebrities with Down Syndrome: American Chris Burke, the Goodwill Ambassador for the American Down Syndrome Society and lead actor in the sitcom, Life Goes On, and the Scottish Sheenagh Hardie, the award-winner and author of "Why Me?: Autobiography of a Down Syndrome Girl."

Omar Al-Awadi in traditional
Kuwaiti costume

Chris Burke, star of Life Goes On, with country music
singer LeAnn Rimes

Sheenagh Hardie in Vancouver with a Royal Canadian Mountie

For me and all the visiting professors, the artistic presentation organized by both Dr. Sadika Al-Awadi, Mrs. Abeer Al-Saleh and the Kuwait Down Syndrome Society was a dramatic conclusion to the scientific conference that provided hope for the future of all those with special needs.

The show presented by Omar and his friends, the "Dancing Angels", convinced me that Down Syndrome is in fact curable condition. He was taught how to communicate, how to love and how to become a member of a team. I was touched at the sight of the children singing and dancing while carrying hearts with the Kuwaiti flag, sending a message of love and peace from Kuwait to the region and the world, in an era where the world seemed filled with conflict, hostility, and war. Yes, LOVE THERAPY has succeeded in helping Omar and his friends to conquer the harmful effects of Trisomy 21.

Eight years ago, the Ambassadors Online Magazine inaugurated its first issue with an article written by Omar's mother profiling his life ("Against All Odds: My Child With Down Syndrome" Vol.1, Issue 1 - July 1998). Um Abdullah wrote: "My dearest son, you have challenged me beyond belief as much as I have dedicated my life to you and the cause behind your ailment. I will continue to do so. I love you very much." Today, during the month that commemorates World Down Syndrome Day and Mothers' Day, we revisited a young man's quest and his mother's dedication to bring forth a symbol that inspired a nation and an old doctor.

Upon my return home to Canada, my son Essam Farag enjoyed hearing about your great achievements. You have truly succeeded to challenge your parents and your country and me. Your progress has convinced me that "Down" Syndrome should instead be renamed "UP" Syndrome! With my long experience working on this condition for more than half a century, I would be privileged to prepare a book about your journey similar to those of Chris Burke and Sheenagh Hardie. Awaiting your reply, with my best regards to you, your family, your friends the "Dancing Angels" and your country. With salutations

Dr. Ali Al-Saif, representative on behalf of HE Sheikh Ahmed Al-Abdullah Al-Sabah, Minister of Health, with Dr. Sadika Al-Awadi and Dr. Leila Bastaki.

Dr. Sawsan Abu Al-Hassan giving awards to Omar Al-Awadi

Omar Al-Awadi leads a team of "Dancing Angels" at the end of the conference.

Dr. Sawsan Abu Al-Hassan giving award to another gifted gentleman with Down Syndrome.

Dr. Sadika Al-Awadi and her three assistants,
Dr. Leila Bastaki, Dr. Makia Marafie and Dr. Sawsan Abu Al-Hassan.

Dr. Sadika Al-Awadi with Prof. Karl Sperling after coordinating a Kuwaiti-German agreement for a molecular study on Down Syndrome.

Prof. Mohsen El-Hazm (Saudi Arabia) and international scientists amazed with the "Dancing Angels" show

From local to global: The "Dancing Angels" are messengers of peace, love and respect

At the end of the conference, Dr. Sadika Al-Awadi and international medical geneticists and scientists enjoyed taking this precious photo with members of the Kuwait Down Syndrome Association.

Prof. Talaat I. Farag, MD, FRCP(E), FACP, FACMG is a former adjunct professor, Dalhousie University, Canada. He is the founder and director, The Ambassadors Research Foundation in 1998. Email: tfarag@dal.ca.

Thanks to Miss Fatma Abdullah Jamal, a photographer and second-year student at Kuwait University for providing all the photos presented in this gallery. Her email is f.jamal@cfw.kuniv.edu.