People with Down’s syndrome need kindness and support

According to Dr Charmaine Scott, founder and chair of the Jamaica Down’s Syndrome Foundation (JDSF), the incidence of Down’s syndrome (DS) in Jamaica is one in 868 live births, meaning that approximately one child with DS is born every week in the country, especially in densely populated areas.

She was speaking at Tim Harris’ birthday dinner at the Terra Nova All-Suite Hotel in St Andrew on Saturday, January 21. Harris, who has Down’s syndrome, is a 37-year-old American businessman and Special Olympics medallist. He and his family were on the island for a series of birthday-related activities. Amid the celebrations, Dr Scott gave a brief exposé on what is going on with people in Jamaica who have the condition. The situation invariably poses many challenges for people who are living with DS, and their loved ones.

This is where the JDSF comes in, to provide emotional support for parents, families and the children by way of psychosocial counselling, mentor parenting, parent group meetings, family fun days, etc. The most recent family affair was a picnic held on the morning of Saturday, January 21, at Funland, Hope Gardens. It was fully sponsored by Tim’s Big Heart Enterprises. Of the over 300 families in attendance, every family got a signed complimentary copy of Tim Harris’ recently published book, The Book of Hugs.

In pre-COVID times, the JDSF also hosted an annual medical symposium to review with healthcare professionals the best practises for managing children with DS. The main fundraising event was an annual concert dubbed ‘Lift up Down’s’. It is the vision of Scott’s mother, the late Ivy Scott, ‘grandmother’ and ‘mother’ to the Jamaican DS community, “who gave tremendous support to this activity”. The purpose of this benefit is to assist the over 500 families registered with the foundation. This year’s staging will be on March 18.

NEXT MAJOR PROJECT

Last year, the offering, just over US$5,000, collected at the Jamaica 60 Church Service at the Sligo Seventh-day Adventist Church in Takoma Park, Washington, DC, was dedicated to the JDSF, founded in 2007. Its next major project is Ivy’s Place, still at its ‘dream’ stage, and named in honour of Dr Scott’s mother. It is intended to be a Down’s syndrome awareness centre that provides healthcare screening opportunities for Down’s and other children with disabilities, training opportunities for healthcare workers, and cardiac screening for Special Olympians.

“Anticipatory screening and intervention for potential life-threatening issues that may be present at birth has now allowed more children with DS to survive. The good news is that although there is no cure for the condition, mandatory screening guidelines and appropriate intervention for the other issues have significantly impacted longevity and quality of live for children and adults living with DS, such that the life expectancy has increased to 60 years from 10 years in the ‘60s. Children with DS can now become adults who can function independently and contribute to society,” Dr Scott told The Gleaner.

In addressing the gathering, Minister of Education and Youth Fayval Williams, representing Prime Minister Andrew Holness, said she was happy for the attention being brought to Down’s syndrome, “positive attention, to say that children with DS can and do fulfil their potential, and that there is a lot of scope for acceptance … for helping them”.

“It helps that we engage with these children; they are bright, they are full of energy, they are full of love … . I think if we should emulate what they do, we would have a much kinder, gentler Jamaica,” she said.

Williams said global life expectancy among people living with DS had been “tremendously increased”, because of advances in healthcare, greater understanding of the condition, as well as the breaking down of “stigmatised notions about DS. “This has resulted in better care”.

In reference to The Disabilities Act, which was passed on February 12 last year, she said the Government was “proud of this achievement”, but there was much more to be done. “We support the work of the JSDF in their mission to increase social awareness and acceptance of children with DS,” Williams stated.

People with Down’s syndrome, first described by Dr John Langdon Down in 1886, have distinct body and facial features. They might also have intellectual disabilities, developmental delays, and a plethora of health problems, such as cervical spine, digestive, respiratory and dental issues. Yet, cardiac problems are the most common medical conditions for Down’s.

They might also have a low level of thyroid hormone in combination with hearing and visual issues, “which are commonly present” and could further affect their ability to learn. Some of the other challenges that they have include limited opportunities for healthcare screening; the need for speech therapy, early stimulation programmes, academic and vocational training; and lack of job opportunities.