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This week is Down’s Syndrome Awareness Week, a week long campaign to help people understand the complexities of living with the disorder. Doctors continuously search for options of therapy to improve the lives of people, specifically children who live with Down’s syndrome, which includes studying if cord blood stem cells are viable sources of therapy.
One mother, Lucienne Cooper is launching her own support group for families who have a member with Down’s syndrome. The group, Get on Downs holds meetings between families with Down’s syndrome experience, who offer advice to new families handling the complexities of the disorder.
Lucienne’s son, Billy was diagnosed with Down’s syndrome as a baby, but she was given little support in learning how to help Billy live with the disorder. Lucienne was dissatisfied with one pediatric appointment, and was forced to learn coping mechanisms on her own.
She says the goal of Get on Downs is to help other mothers avoid going through that struggle to adjust their lives.
“What motivated me was knowing how I felt when Billy was born, not knowing anything about disability let alone Down’s syndrome and the feeling of relief I got when I met my friend’s daughter who was four at the time.”
The meetings will be held in Lucienne’s hometown of Carshalton, a suburb within the Greater London metropolitan area. Get on Downs will be held on Thursdays, with the first official meeting scheduled on March 20 to commemorate Down’s Syndrome Awareness Week. Get on Downs is also supported by numerous other charities dedicated to improving the lives of children with disabilities or disorders.