Brecon's Forever Home Fund

Hi. I'm Lucy, mum to Brecon (Brecs) who is an incredible, resilient, and overarchingly brilliant human. His story is complicated, but essentially he was born with a rare chromosome disorder- dup15q syndrome- which underpins a whole bunch of 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 4 month in-patient stay, and he broke his femur resulting in another 3 month in-patient stay. On top of all that, he's had 2 brain surgeries and a VNS implanted to try and control the seizures, without success. It's been fairly hellish, if I'm honest.

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 we're completely reliant on someone moving out or passing away for a property to become available. We simply don't have any extra funds to put towards this (I could go on forever but in summary our earning potential has been severely limited over the years due to managing Brecon's needs, which are all-consuming-plus there is no childcare for the Brecons of the world, meaning the array of jobs I could do were very limited). We don't own our own house-we rent, and we 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 other bodge job temporary fix which will be hugely detrimental to him. Group homes can't manage his needs, and we've already applied to over 80 specialist residential college placements who all said his needs are too complex for them. He's been through so much in his little life already, his future is massively uncertain medically, and we desperately want to ensure he has access to his best life. But being bounced from airbnbs or temporary lets with his entourage of carers is NOT his best life. We also don't realistically know what his life will look like going forward- there's been a consistent decline medically speaking over the last few years- we have a completely different kiddo. 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 in the (very likely!) event 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 very broken. Currently no housing and we're T minus 5 months away from him turning 18. It's terrifying. Please help if you can.