Children in Need

By November 20, 2018 All, Families
Connie and Joe Elson

BBC’s Children in Need told the story of Joe and Connie Elson, two children who have Metachromatic Leukodystroph (MLD). Connie was diagnosed with MLD when she was just five-years-old. The condition has left her unable to walk or talk. Two weeks after Connie was diagnosed, it was discovered that brother Joe also had MLD. He was able to undergo a clinical trial which has stopped MLD from progressing.

The film telling their story (below) has now reached over 130,000 views. This national exposure has highlighted the disease and we are now submitting an application for 2019 to see if we can get funding for our Family Fun Days.