Always on
This project successfully funded on 27th November 2025, you can still support them with a donation.
Travels for Riley
Manchester, England, United Kingdom
Aim
I'm raising money for a fully customised, off grid campervan that is fully adapted for Riley's needs so we can travel together.
I'm a mother first and foremost, and my world revolves around my children. My eldest son is 22, has autism, adhd and learning difficulties. My daughter is 18 and has autism and waiting on an adhd assessment. Riley is my youngest, 14 years old and was born with a very rare condition: congenital long segment tracheal stenosis, along with choanal atresia.
Separate to this he was also born with a brain malformation: Neuronal migration disorder, Pachygyria on the right side (not enough folds) and polymicrogyria on the left (to many folds). This is not a formal diagnosis, we have no idea what caused this and we may never know, his condition is life limiting and upon research most don't make it past 10 years old, some don't even reach 1 week old!
Secondary to this he has quadriplegic cerebral palsy, drug resistant epilepsy, visual and hearing impairment, an unsafe swallow (aspirates, even on saliva) and is gastrostomy fed with a full blended diet that I cook and blend at home for him. He had a hip reconstruction when he was 10, he has scoliosis that will require surgery and ongoing procedures to lengthen the rods in the future, that's if they deem him well enough and eligible for this surgery, his eyelids were still fused together at birth requiring multiple surgeries and some dysmorphic features to his face, ears and thumbs, He has rotation of his trunk and a flat rib cage, this means eventually his organs will become impacted from the pressure, causing stress, discomfort, pain and breathing issues from the impaction on his lungs, he will need surgery on his shoulders when he stops growing because they are partially dislocating and I usually have to roll them back in to place, more so in the mornings or after a seizure.
Despite all of this Riley was always so happy, smiling, laughing and loved the sound of his own voice, all of the time! Even through illnesses and after every surgery (and there's been many), but Riley has lost interest in almost everything he once enjoyed, his personality has faded, he is exhausted and depressed, he hasn't gained weight in over 4 years and is becoming worryingly thin, despite trying many different things to help him gain weight. I took an holistic approach and have been able to remove every pharmaceutical medication except for buccolam midazolam, which is used as a rescue for his seizures when at school or respite. The only thing that really brings Riley back to life is being surrounded by nature. This is something we really struggle to do, get out in nature whether to just sit or walk.
Riley now requires position and pad changes every 2-3 hours, society does not accommodate Riley's needs for pad changing, with changes places still being very scarce. Riley's hip plate is also close to piercing his skin and so the position changes are more crucial than ever until he has surgery to remove them. He needs somewhere he can lie for at least 2 hours until he can go back in his wheel chair. Going away and staying in a caravan causes chest infections from him lying flat in a bed that isn't suitable, he requires a hospital style bed with the back on an incline, we can't access adapted caravans because we have a dog which isn't allowed in them. Hotels don't accommodate storage of his blended food and due to specific dietary requirements I can't just throw together cupboard foods to make a meal.
Having such a small gap between position changes makes it near impossible to drive out to any nice country parks in nice weather for walks, or to just sit at the side of a lake. I have to walk alone when he is in school or at respite and it breaks my heart to think that these final years will be spent separated, without him joining us on family holidays and days out, so much so I have been avoiding them. The last time I went for a good walk was in July (2025) up peak district. As his mum, I don't want to be away from him, I want him with me on all the days out, the family holidays, in nature where I can see his eyes light up, instead we are confined to 4 walls with a small trip to do a food shop, that is the highlight of our time together and that's not how it should be.
We take so much for granted, the small things that most never even have to think about, but what Riley has taught me is that time is so precious and that every moment should be lived, he deserves to live too, not just exist between 3 different buildings.
My dream for us is to out be in nature, where we can go for walks or lie on a bed with the most beautiful views from a fully customised, safe, off-grid van, this will allow us to travel anywhere, without limits, just careful planning, regular stops to accommodate those position changes without having to drive back home because everything Riley needs, will be right there with him.
I also want to show other families that living with such complex needs shouldn't mean living in isolation or missing out on those amazing memory making family holidays.
So...... I am asking for your help and support in getting the funds or even a sponsor for the perfect van, to allow Riley to live the rest of his days in the only place that brings him joy, nature! as much as we possibly can.
Funding method
Keep what you raise – this project will receive all pledges made