It's the 2022 Big Give Christmas Challenge Week, where your donation will be matched to double the impact of your gift. We're sharing stories of the young people that your donations will support. Read on to find out how your donation will make all the difference this Christmas.
"George is a cheeky 13-year-old who has been using Rose Road for overnight respite since he was 6. He has a wicked sense of humour and the most infectious smile that we are blessed to live with."
Life changed for us when George was poorly at 5 months old and CT scans showed his brain wasn’t formed in the same way as other children’s. He has a developmental delay, cerebral palsy, polymicrogyria, epilepsy, is cortically visually impaired and he has episodes of very poor health, instability, and ‘storming’ - where George’s body doesn’t rest due to hyperactivity in his sympathetic nervous system.
Day to day care for George is a very set routine and he requires round the clock care to ensure he is safe.
He has a combination of medications to keep him comfortable, control his seizures and to improve his quality of life; he needs someone readily available at all times for both emergency care and routine care, whether that’s to manage a seizure, clear his airways, insert a catheter or to just be present for him. Family life can feel restrictive and we get very little time to rest.
George lives with us and his 3 sisters, Ellouise, Amone and Sienna. The girls are amazing and get all of life with George. They embrace and share amazing times with him, understand him and accept him, but they also see the scary times when he is unwell and value him more so each time. They help us to look after him (between taking selfies and snapchats with him) and bring a sense of fun, cheekiness, and banter to George’s life.
We are very sure that George has made his sisters braver, stronger and more caring, adaptable people.
George is smiling and happy. Even through his most scary episodes, as soon as he is better his big grin returns. He has an amazing strong will to survive. We find it so frustrating that people underestimate George, they don’t think he understands as much as he does. We know that even though he sometimes struggles to show us what he thinks, he understands what is happening and enjoys winding us up!
Rose Road is a lifeline for us and for George, we couldn’t survive without them. It’s so good for George to get away from us and have some focussed one on one time with their staff.
With people who aren’t tired, who understand him and are trained to support all his complex needs. It gives us time to be a normal family, because let’s face it, our normal isn’t your normal. Somethings just aren’t possible with George but respite allows us to give the girls a normal evening like their friends in the playground talk about.
George’s needs are complex and forever changing, but the team at Rose Road are in constant touch with us before, during and after each of George’s breaks and every time something changes for him, to make sure he is safe and happy. I’m pretty sure we’ve spoken to them every single day some weeks!
The very best bit is that just for a little bit, when George first gets home from respite, he’s been so well looked after, that we get the chance to just be his Mums and not his nurses or his carers, just his Mums.
We are supporting an increasing number of children and young people like George with more complex disabilities and clinical care needs. These young people need extra support to eat, sleep and stay safe and happy. We need your support to ensure our care can continue to meet their needs, and enable these incredible young people to flourish. To learn, plan, make friends and meaningfully communicate with and participate in the world around them.