This date (21/3) is symbolic for the 3 copies of chromosome 21, unique to people with Down Syndrome. The aim of the World Down Syndrome Day celebration is to promote awareness, understanding, seek international support, and to achieve dignity, equal rights, and a better life for people with Down Syndrome globally.

SCHS’s Al Wafaa School for Developmental Training organized two lectures by Dr. Latifah Rashed, Nutritionist at Al Qasimi Hospital, and Dr. Eman Kashef, a Social Worker from Egypt, at Sharjah Supreme Family Council on Monday, March 21st.

Mrs. Mona Abdel Kareem, Head of SCHS’s Al Wafaa School for Developmental Training, introduced lecturers to the audience. In her introduction, Mrs. Mona Abdel Kareem emphasized that, “Actions speak louder than words. Therefore, all institutes should work together in order to improve the lives of people with Down Syndrome”.

 

Dr. Latifah began the lecture by stating that genes that obtain an extra copy of chromosome 21 are responsible for all characteristics associated with Down Syndrome. Normally, each human cell contains 23 pairs of different chromosomes. Each chromosome carries genes, which are needed for proper development and maintenance of our bodies. At conception, an individual inherits 23 chromosomes from the mother (through the egg cell) and 23 chromosomes from the father (through the sperm cell). However, sometimes a person inherits an extra chromosome from one of the parents. In Down Syndrome, an individual most often inherits two copies of chromosome 21 from the mother and one chromosome 21 from the father for a total of three chromosomes. Down Syndrome is caused by the inheritance of three chromosomes 21, the disorder is also called trisomy 21. About 95% of individuals with Down Syndrome inherit an entire extra chromosome 21. The lecturer added that babies with Down Syndrome may be very challenging to breastfeed. It takes a great deal of patience to teach the baby to suck properly (and strongly) to obtain a milk ejection reflex and to stimulate your milk supply. For these babies, it is recommended that you begin by hand-expressing your breast to start the milk flow and hold the breast firmly so that the nipple doesn’t slip out of the baby’s mouth. It is also critical that you give good support to the head, jaw, and body of a baby with Down Syndrome, as they display general body hypotonia, or low-tone. If you prop the baby firmly with a pillow in your lap or use a sling baby carrier, you will have a hand available to hold the baby’s jaw and your breast. It may take a few days to familiarize yourself to this technique, but once you’ve got a position that you’re both comfortable with, stick with it!

Dr. Latifah concluded the lecture by saying that children with Down Syndrome are more likely than their unaffected siblings to have higher levels of a hormone associated with obesity, according to pediatric researchers. The hormone, leptin, may contribute to the known higher risk of obesity among children and adults with Down Syndrome. Therefore, parents should pay particular attention to their nutrition and health.

In the second lecture, Dr. Eman said that for children and adults with Down Syndrome, social understanding is usually a strength, beginning with infancy. Many of the cues which indicate how someone is feeling are non-verbal, for example, tone of voice, facial expression and body posture, so that even when a child or adult does not understand all the spoken language being used in a social situation they are still able to pick up the main messages about feelings and behave in an appropriate way, despite the delays in their development of spoken language skills. This has led a number of authors to emphasize the agreeable social skills, empathy and social competence of most children and adults with Down Syndrome. They tend to have better social understanding and social behavior than other children with similar levels of cognitive and communication delay and this can help them to be successful in community activities and in an inclusive education.

Sharjah City for Humanitarian Services (SCHS), a non-profit organization located in the United Arab Emirates celebrates World Down Syndrome Day on 21 March every year.

This date (21/3) is symbolic for the 3 copies of chromosome 21, unique to people with Down syndrome. The aim of the World Down Syndrome Day celebration is to promote awareness, understanding, seek international support, and to achieve dignity, equal rights, and a better life for people with Down syndrome globally.

SCHS’s Al Wafaa School for Developmental Training decided to organize activities during the week of 21/3. Activities include sports at Al Thiqa Club for the Handicapped and Sharjah Ladies Club in which SCHS’s Down Syndrome students will participate. On Monday, March 21st, Dr. Latifah Rashied, Nutritionist at Al Qasimi Hospital, will provide a lecture to mothers of Down Syndrome children regarding healthy food. In addition, Dr. Eman Kashif, a Social Worker from Egypt, will provide a lecture regarding socialization in relation to Down Syndrome.

On Tuesday, 22nd, Dr. Eman will provide consultation to mothers of Down Syndrome children in private sessions. The sessions will take place in Parents of the Disabled Association. The week will be concluded by 24 of SCHS’s Down Syndrome students participating in a football match between Sharjah team and Al Ain team. Students from SCHS will accompany players when entering the field. The match is sponsored by National Soil Investigation and Bldg Materials Lab, Al-Romaizan for Gold & Jewellery, Al Thiqa Club for the Handicapped, and Parents of the Disabled Association.

Mrs. Mona Abdel Kareem, Head of SCHS’s Al Wafaa School for Developmental Training, considers this celebration a reminder of the importance of providing community assistance to this community. After all, it is a joint responsibility. She advices experts who work in hospitals and private clinics of the importance of benefitting the public in a scientifically positive fashion. They should focus on the mothers who have given birth to Down Syndrome babies in order to avoid trauma and its negative effects. This is to be done by giving parents accurate information about the condition of their infants. The positive effects of early intervention should be emphasized as well. Specialists must work diligently in order to help parents overcome this difficult time.

Mrs. Mona Abdel Kareem mentioned that the vital role of the community in raising Down Syndrome children with in a strong familial environment. The initial acceptance into society for children with Down Syndrome should begin with the medical crew who should try to instill the importance of parents accepting their child’s condition. The next step is to provide families with accurate and up to date information regarding the Down Syndrome. Parents should be aware of the significance that early intervention and a proper education can do to improve the quality of life for a child with Down Syndrome . These children need a great amount of care and passion. In this way they will develop socially, emotionally, and linguistically. In addition, they will learn how to become more independent. Moreover, the members of the community must respect the feelings of these families. The general view towards the disabled has become better over time due to the cooperation between various institutions.

She advised mothers of the disabled not to be remorseful or embarrassed by their children. They should educate themselves by reading books and surfing the net for the latest information about Down Syndrome. Creating and maintaining communication with other families that have Down Syndrome children is very important in lessening the psychological burden imposed by disability. Recent researches show the social and psychological characteristics of children with Down Syndrome prove that children with Down Syndrome are often social, tender, merry, and have repetitive mannerisms. They are shy in front of visitors.

Individuals with Down syndrome may vary significantly in terms of physical and psychological characteristics. The list of possible characteristics however should not obscure two important facts: clearly individuals with Down syndrome are first and foremost people who have similar needs, desires, and rights as others; and, the effects of intensive interventions with young Down Syndrome children are only now being evaluated, but also making many historical descriptions of Down Syndrome no longer accurate. Some of the physical characteristics observed in persons with Down Syndrome include the following: the back of the head is often flattened, the eyelids may be slightly slanted, small skin folds at the inner corners of the eyes may be present, the nasal bridge is slightly depressed, and the nose and ears are usually somewhat smaller. In the newborn there is often an excess of skin at the back of the neck. The hands and feet are small and the fingerprints are often different from chromosomally normal children. Individuals with Down syndrome have loose ligaments and their muscle strength and tone are usually reduced. If the ligaments between the first two neck bones are loose, there may be a condition referred to as Atlanto-Axial Instability. About one-third of children with Down syndrome have congenital heart disease. Other congenital defects such as blockage in the bowels and cataracts, although rare, may also be present. Hearing deficits, visual problems, and thyroid dysfunction are also often observed in persons with Down syndrome.