The Big Build - Weston-super-Mare
The Sweet family in Weston-super-Mare are happy and truly inspirational in their close-knit 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. He is significantly hypermobile and suffers terrible pain in his joints, unsettled sleep and chronic constipation as part of his condition. He is also being assessed for autism.
The family had been struggling with Harry's health issues for three years when, in 2017, after genetic testing, Louisa and Max were diagnosed with Friedreich's ataxia, a rare and life-limiting neurodegenerative condition for which there is currently no treatment or cure. It will see them become permanent full-time wheelchair users in their teens, and it may affect their speech, fine motor skills and vision. They also have enlarged hearts, spinal scoliosis and suffer fatigue as part of their condition, but like Harry they are children to be truly admired. Amazingly, Max, who is also being assessed for autism, has stated that if he dies he wants to donate his organs to save other children, but his mother Cat just can't face filling in the forms.
Cat can no longer lift the children in and out of the bath or carry them up the stairs. 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, and 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, DIY SOS and kind local volunteers are stepping up to help this truly deserving family.
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