“This is Theo – our determined, opinionated, cheeky, happy wee boy. He was born on the 1st of April 2021 but has never been home. It’s no joke.“
Our 2023 Christmas Appeal has now landed, and focuses on Theo, a two-year-old boy with brain damage and cerebral visual impairment, and who is supported by our Early Years team. Since being born in April 2021, Theo has never been home, but since being supported by us, he has shown how amazing and determined he is in the face of all odds. You can read a snippet of the Christmas Appeal, from the perspective of Theo’s parents, below:
Theo has been in hospital his whole life – but we’re hoping that will change soon and we can get him home for Christmas and be a proper family. Sleeping in his own room, in his own bed, surrounded by family and friends, not doctors and nurses. We’ll be sure to let Santa know he’s got a new address.
During the first year of Theo’s hospitalisation, we often felt utterly helpless, out of our depth and frustrated. At almost one year old, Theo was frustrated too. Lying in his hospital bed he was miserable and girned all day. No matter how much we cuddled and tried to entertain him, it wasn’t the kind of stimulation he needed.
If it wasn’t for Sense Scotland, Theo would still be that miserable child. With their help, we now know what he needs and how we can help him. That’s why we’re asking if you can donate to Sense Scotland this Christmas – so that more parents like us have the skills, knowledge and confidence to do what’s right for their child.
Theo’s Story
Due to complications during pregnancy, Theo was born at 32 weeks, weighing 3lbs exactly. Like every neonatal baby, we knew he would face challenges but at first he was doing pretty well. After 5 days we finally got to hold him and we were hopeful he would be home by his due date – May 23rd 2021.
But at 3 weeks old, Theo had to be blue-lighted to the Sick Kids in Glasgow. NEC (Necrotising Enterocolitis) had been ravaging through his intestines and he was in a critical condition. In that first week he had three major operations, and every time we were told he might not make it through. Miraculously he did and we were prepared for a long recovery in hospital, possibly a few months.
A few months turned into a few years.
Theo’s condition is complex – in addition to having Short Bowel Syndrome, he has brain damage and cerebral visual impairment. He had 25 major operations by the time he was 17 months old, as well as hundreds of smaller procedures. We’ve been by his side every day, caring for him and learning as much as we can to give him the best chance at life. We gave up everything to be with him. I know you would have done the same.
Proving Everyone Wrong
The most important thing we’ve learned is how amazing and determined Theo is, thanks to Sense Scotland. He absolutely loves his weekly sensory play sessions with Kim from their Early Years Team. When we tell him “Kim is coming!” his wee face lights up. He instantly recognises her voice and although he doesn’t crawl yet, will angle his body and slide his way over to her. He knows she is going to sing and rock him back and forth (which he loves). He gets very excited, which makes us excited too. So many professionals we feel had written Theo off, but not Kim – she’s the one who has done loads to develop him. And us.
We were able to show Kim the subtle ways in which we had noticed Theo communicates how he feels and what he needs. It was Kim who opened our eyes to ways in which Theo processes information – through sounds, touch, taste and smell, instead of vision. We now celebrate every small change and praise every little try. Theo is gradually overcoming his hand sensitivity and will grab things, even trying to pull himself up. His concentration has improved and we can see him learning. Other professionals told us he might learn a skill but then regress from it. Well it’s not happened yet!
With Kim’s help we were able to access funding for resources to stimulate Theo’s learning – scented bags, projector, lights, balls, space blankets etc. All things we knew he wouldn’t get bored with in 5 minutes. We have also been attending Sense Scotland Twinkle Tots group in TouchBase Glasgow. It’s one of the few times he gets to socialise with other children. At first we worried about his safety – he has various tubes and a stoma bag – but now we are more worried that he might hurt the other kids – he’s just so active!
Play is so important to a child’s development, as is socialisation. Doing both safely with children with complex needs takes skills and specialist resources which don’t come cheap. Can you donate today to help children play and learn together, no matter their challenges?
We’re hoping that Theo will be home for Christmas but we’re not leaving until the time is right – no matter how long it takes – because we’re not coming back. We’ve never experienced being home as a family so we’ve never lost it. You’re probably thinking “I don’t know how you do it.” But trust me, you would. You have no choice.
We’re also hoping Kim can still come and help us when we do get home. We’re going to struggle to get to TouchBase – neither of us drives and we’re so far away. But, with your support, Sense Scotland can continue to provide help outwith hospital. A donation of £50 could pay for a home play session. Can you give that gift? It would mean the world to a family like ours.”
Read Theo’s story here and help us reach more families in need by donating today.