The family of a 14-year-old boy from Wallsend, who has defied medical expectations, is fundraising for a communication device they say gave him his voice for the first time. Milo Browne has 2-Methyl-3-hydroxybutyryl-CoA dehydrogenase deficiency (M3BHA), a rare degenerative condition, and was expected to lead a short life. Despite being told to expect the worst, and at one stage advised to "take him home to die," he continues to fight.
Device transforms communication
Milo is non-verbal, requires round-the-clock care, and has not been in education for over a year. In recent weeks, the family has used a device manufactured by Liberator, powered by eye-gaze tracking technology. His parents, Stephen and Laura, said it allowed him to communicate and even joke with them. They have shown ChronicleLive how Milo uses the device to say he loves his mum and dad.
Stephen said: "He's been able to joke. I was able to say 'who's your favourite, mum or dad?' and he chose 'dad', 'dad', 'dad'. We had that device for about four weeks before having to send it back, I pretty much fell apart having to pack it away. We use it daily with him. We have been able to hear his voice, it's been absolutely life-changing."
Funding needed for permanent device
The family said eye gaze technology is referred to in Milo's Education, Health and Care Plan (EHCP), but he has not been receiving provision from that plan. They have not been able to access the device on the NHS. To fund it, they need to raise close to £10,000. On passing £2,000, Stephen said: "We have been left completely lost for words by everyone doing everything they can to give Milo his voice. We want to say the biggest thank you to every single person who has donated, shared, and supported our boy."
Stephen added: "His loan device has to go back in less than two weeks. We feel left in limbo." He also said: "He can tell us when he's happy or sad, or when he wants to play. It shows that he's understanding what's going on in the world Having him say I love you - it's his voice and it's so important for anyone like him, who needs that communication device, to have."
Support from Lost Voice Guy and trust response
Britain's Got Talent winner Lee Ridley, known as Lost Voice Guy, has backed the family's push. He said: "Milo is 14, has a rare condition, is non-verbal, and needs 24-hour care. Thanks to eye gaze technology, he's been able to tell his family what he wants and how he feels for the first time. Imagine finally finding your voice, only to be told you're about to lose it."
A spokesperson from Northumbria Healthcare NHS Foundation Trust said: "This is a very complex case and we continue to offer to support the patient and their family to ensure they receive the appropriate care. Due to patient confidentiality, we are unable to comment any further."
