Theo was diagnosed with a rare genetic disorder at just three days old. He has CHARGE syndrome – a complex syndrome involving multiple sensory impairments with often comes with life-threatening birth defects, including complex heart and breathing problems. CHARGE affects just 1 in 10,000 births worldwide.
Theo is severely visually impaired, is fed by a gastronomy tube, had limited balance, and a life-limiting heart condition. Theo has been through multiple surgeries, including two open heart surgeries. As an unforeseen result of surgery Theo also has pulmonary hypertension meaning he would not be able to cope with a third and final surgery and at present is not eligible for a heart transplant.
His mum, Myriam explains: ‘His heart will get him into adulthood but after that it is uncertain. Whatever happens and for however long he stays with us, we love him unconditionally and want him to fulfil his vast potential and live the best life possible. We do everything we possibly can for him. We make sure that the teachers, doctors and therapists are engaged to give him the best chances in life.’
The CHARGE Family Support Group will receive a grant from this year’s Jeans for Genes Day to fund a family weekend in 2016, providing information and social activities for families.
‘The family weekend has always been a great opportunity for us to feel less alone,’ explains Myriam. ‘For us is it about talking to other families that we would never have the opportunity to catch up with otherwise.’