Thursday 3rd December, 8pm, BBC One
The Sweet Family in Weston-super-Mare are happy in their close-knit local community. Louisa (14) Max (11) and Harry (6) were born healthy and family life was good, until Harry was diagnosed with a genetic condition called Ehlers Danlos Syndrome.
Harry is a wonderful child but is significantly hypermobile and suffers with terrible pain in his joints, unsettled sleep and chronic constipation as part of his condition. Harry is also being assessed for Autism, although he is a very chatty little boy.
The family have been struggling with Harry’s health issues for the last 3 years. Then in 2017, after genetic testing, Louisa then 12 and Max then 9, were diagnosed with Friedreich’s Ataxia, a rare and neurodegenerative life limiting, Neuromuscular condition, for which there is currently no treatment or cure. It will see them as permanent wheelchair users in their teens. It can also affect their speech, fine motor skills and vision amongst other things. They also have enlarged hearts, spinal scoliosis and suffer extreme fatigue as part of their condition. Like Harry, they are children to be truly admired. Amazingly, Max, who is also being assessed for autism, has stated if he dies he would like to donate his organs to help save other children, but his mother Cat (33) just can’t face filling in the form.
Cat can no longer lift the children in and out of the shower or bath, or carry them upstairs. Louisa and Max only manage the stairs by carefully and painfully crawling on all fours, which takes considerable time and effort. Both of the boys are already part time wheelchair users with Max and Louisa to be permanently wheelchair bound, which means their tiny home will soon have to accommodate three wheelchairs.
All three children now struggle with basic normal life at home, unable to undertake simple tasks without help and with Louisa rapidly losing her teenage independence instead of gaining it, despite the immense love and care from their inspirational parents Cat and Chris (41, car mechanic) and so that’s why DIY SOS and the local kind volunteers are stepping up to help this truly deserving family.