Milo's Voice. Help Us Keep It.

This is Milo. He is 14 years old. He has a rare mitochondrial condition called M3HBA. He is believed to be the oldest living person in the world with his condition. He is on palliative care, needs 24-hour care, and has complex medical needs that most people cannot imagine.

Milo cannot speak. But he has so much to say.

For the first time in his life, Milo has found his voice.

For the last few months, Milo has had a loan of an Eye Gaze AAC device - a communication aid he controls with his eyes. It tracks where he looks and lets him speak.

The difference has been life-changing.

Milo is choosing. He is telling us what he wants, how he feels, what he likes, what he doesn't. He is commenting, joking, saying "mum" and "dad" in his own way. He is telling us he understands. Is able to show cause and effect and something to build on. For a child who has been trapped without a voice, this is everything. This is dignity. This is independence. This is quality of life.

He lights up when he uses it. We have videos of him using it in music therapy, at home, laughing as he realises we understand him. Data reports show clear, intentional use. Anyone who has seen him knows - he understands exactly what he is doing. Just no way of telling anyone, until now.

'In less than 2 weeks, his loan ends. And his voice will be taken away.'

We were told the NHS cannot provide this device. Why?

Because Milo no longer has a named Speech and Language Therapist. They don't have information because they wont see him or get the information.

Because he has had 'no education for 989 days - 32 months.'

Because the Local Authority has failed to deliver his EHCP - the legal document that already says he needs ACC.

So they say there is "no evidence" he can use it. Even though we have the evidence. Videos. Data. Progress report from qualified therapists who have worked with Milo for years. Who uses ACC with him in her sessions and NHS staff have witnessed him use it.

They won't come to see him use it. So he doesn't qualify. Its so sad, but we are used to it.

This is the forever battle we face as Milo's parents. The battle no parent should have to fight. The battle just to be heard. To have a voice.

We are told it could take 'years' for Milo to get this device via the NHS. Years of assessments, referrals, waiting lists. Years he may not have. Even though he should already have it.

Milo is palliative. Every day matters. Every week matters. We cannot let him lose his voice again because the system has failed him.

'We need your help to raise £10,000.'

This will cover:

- Eye gaze device

- Specialist software and licenses

- Mounting and access equipment so Milo can use it in bed, in his chair, everywhere

This is not a luxury. This is his voice. This is his human right. This is his chance to communicate with the world, to have choice and control when so much has been taken from him.

Milo has been failed by the system. Let down at every stage. 32 months without education. Without therapies. Without the communication aid he is legally entitled to. He deserves the best chance and the best quality of life we can give him.

If, by some miracle, the NHS does fund this device in the future - any funds raised will go directly towards Milo's ongoing communication support, accessories, training, and technology to improve his quality of life and keep his voice going.

No child should have to fight to be heard.

Please help us keep Milo's voice.

Thank you from the bottom of our hearts,

Stephen, Laura and Milo ❤️