I realised we haven’t introduced ourselves fully: I am Rohan’s mum and a Charted Chemical Engineer; fourteen years ago I retrained to be a counsellor. I have been devoted to caring and providing Rohan with education at home for much of his life as he didn’t get on well at school and kept ending up in hospital. These admissions are now a rarity, due to the excellent care his current amazing care team provide. When we have had changes in care team in the past it has been totally life changing for me: it puts me on duty 24hrs/day for months. Rohan gets stressed and refuses food and drink from anyone else – even I struggle. His seizures increase and it’s downhill from there. We are so lucky right now that Rohan’s care team are amazing; they care for him like a little brother. He is so loved, it warms my heart seeing them together! I personally see the care team as part of my family – The LA/ICB want to stop this and we don’t understand why?
I met his father Dave at work, and married him 25yrs ago.
I’m Dave, Rohan’s father, also a Chemical Engineer, but now a Fellow of the Institution. These days I work as a climate change consultant, helping heavy industry around the world to reduce their greenhouse gas emissions and save the world, one company at a time. Rohan loves joining me when watching rugby, normally stands right in front of the TV, particularly the women’s. I think we also connect with taste in music, Rohan sits and giggles when in the back of my car when I have Queen and Elton John blaring, though I’m not sure he’s so keen on Led Zep!
Rohan is our eldest, his younger sister Serena is studying at Cambridge University. Serena loves her books. I always read to them both when they were little. Serena still adores reading to her big brother, he will still snuggle up to her and sometimes put his head in her lap. Rohan might not be verbal, but he still finds ways to wind his little sister up. When she is sat on a sofa chair, he often plonks himself on top of her despite all the other chairs being available. He laughs when she is having a meltdown and walks into her room if the door is open to create chaos if he can.
We were made to feel like we were the only ones experiencing what we were by Adult Social Care (ASC). We felt like David up against Goliath. The only problem is, they underestimated us: the dedication of a mother, embrace of a father, and love of a doting sister. We now have a community, a family that is way bigger than them. We have over a hundred people who have supported us on our gofundme page so far; you are part of our team, our family. We are not alone, with a loving army to protect our Rohan! Thank you all for your ongoing support. Please pass on the link, the more people who share our campaign, the quicker we will get to the £100,000 we are aiming for, to help other families and create change.
