Nala and Teddi - two sisters, one bittersweet story
Metachromatic Leukodystrophy – or MLD – is an extremely rare and cruel genetic disorder. It causes severe damage to a child's nervous system and organs and is usually fatal.
One-year-old Teddi Shaw has become the first child to be treated by the NHS with a new life-saving gene therapy - a single infusion of a drug aimed at stopping her disease in its tracks. The disease is MLD - Metachromatic Leukodystrophy - a rare genetic disorder which is usually fatal. The treatment, called Libmeldy, is the most expensive ever approved for the NHS - costing nearly three million pounds per patient - although a confidential discount has been agreed. But while there’s huge relief for Teddi, her parents know it’s bittersweet. Their older daughter, Nala, also has the same rare disease. But for her, the treatment has come too late. Now the family are doing what they can to raise awareness about MLD. For 5 Minutes On, they share their story with our Medical Editor, Fergus Walsh, who has followed the treatment at the Royal Manchester Children’s Hospital over several months.
Image Credit: Βι¶ΉΤΌΕΔ
