Hello, I'm Lucy, mum to Brecon (Brecs), an incredible, resilient and overarchingly brilliant human.

His story is complicated. He was born with a rare chromosome disorder – dup15q syndrome – which underpins other diagnoses; uncontrolled epilepsy, autism, profound learning disability, osteoporosis, sensory processing differences, communication challenges and mobility issues.

Over the past few years Brecs has been in hospital a lot; he's spent time in a coma due to unstoppable seizures, he broke his hip and pelvis at school when he fell from height during a seizure, resulting in a four-month in-patient stay, and he broke his femur resulting in another three-month in-patient stay.

On top of all that, he's had two brain surgeries and an implant to try and control the seizures, without success.

Unfortunately, however much we advocate for Brecs, and however good he is at melting people's hearts, the system isn't set up for the Brecons of the world.

His 18th birthday is looming – at which point he will need a home and a round the clock care package to support him to live his best life.

But there's a housing crisis and our earning potential has been severely limited due to managing Brecon's needs. We don't own our own house; we rent, and just about get through the month on a double income with nothing left at the end of it.

If we don't secure a property for him by August, Brecs will be at risk of some temporary fix which will be hugely detrimental to him.

Group homes can't manage his needs, and we've applied to over 80 specialist residential college placements who have all said his needs are too complex for them.

He's been through so much in his little life, his future is massively uncertain medically, and we desperately want to ensure he has access to his best life.

Being bounced from Airbnbs or temporary lets with his carers is not his best life. We also don't realistically know what his life will look like going forward – there has been a consistent decline medically speaking over the last few years. Again, heartbreaking.

Which is where you come in. I know this is massive and I have no idea whether we'll manage it or not, but the dream is to raise enough funds to buy him a forever home that we can adapt, future proof and make his own.

And if we don't manage that, we'll use any money we do raise to make sure wherever he ends up permanently has everything he needs (adaptations, sensory equipment etc).

I wish this was different. There's so much about this I wish was different. Brecs deserves a shot at his best life, just like the rest of us, but the system is so broken.

No housing and we're three months away from him turning 18. It's terrifying.

For more information and to help us raise funds, please go to www.gofundme.com Brecon’s Forever Home Fund

Thank you,

Lucy Parr