Life is a rollercoaster

CHALLENGES FROM ALL DIRECTIONS

JOANNA BRETT’S SON SEBBY HAS BEEN WITHOUT A DIAGNOSIS SINCE HIS PARENTS FIRST NOTICED HIS DIFFERENCES IN PHYSICAL DEVELOPMENT AS A BABY. HERE, SHE TALKS ABOUT THE CHALLENGES FACED BY HER FAMILY AND THE OPERATION THAT COULD MAKE ALL THE DIFFERENCE – BUT ISN’T AVAILABLE IN THE UK

When Sebby was born, the life ahead of us was very different from what we had imagined. By 10 months old we had taken Sebby to the doctors as he had missed most of his physical milestones and wasn’t even sitting yet. When he was around 18 months old, I asked the doctor, ‘Is it just that he is a bit delayed?’ This was followed with a deafening silence before the awkward reply of ‘no’. By this stage I was pregnant with our daughter and there were concerns that whatever was preventing him moving properly was genetic and would affect her. Fortunately this hasn’t been the case.

Sebby mainly struggles with strength and movement in his legs and core. Three MRIs, many blood tests for genetic analysis and a lumber puncture have not managed to reveal the cause of his disability. Sebby is affected by spasticity which is painful. We heard about an operation called Selective Dorsal Rhizotomy (SDR) where his spine is opened, 70% of his sensory nerves are cut, which removes most of the spasticity. After a lot of research, we decided this operation was definitely the right thing for him. Frustratingly, two hospitals in England turned him down, mainly as he was undiagnosed. We felt it didn’t matter what caused the spasticity; he had it and it was already causing damage to his hips. The spasticity needed removing for him to stand any chance of waking. Because of the pain, we thought if nothing improves mobility-wise, it would still be worth it to improve his quality of life. We applied to St Louis in America, where the surgeon had performed four times more operations than all the surgeons combined in England. We were thrilled when he agreed that Sebby was a candidate! Six months later we took four-year-old Sebby and three-year-old Lottie to America for a month, to have SDR, tendon lengthening and intensive physio for three weeks. We returned a week late into the start of his reception year at school, feeling positive.

Unfortunately, he needed other operations as the spasticity that was in his body had caused damage. Six months after SDR, he had a double hip operation where both femurs were cut then reangled, and one hip reshaped (then the metal removed a year later). An ingrowing toenail became infected due to the way his foot twisted inwards when he trying to walk, and this needed to be operated on. As he started walking with his sticks more frequently, we noticed his feet were always angled inwards which prevented him standing properly. The operation was delayed because of Covid-19, but nearly two years after the SDR operation the subtalar joint in both his ankles were fused together. He was in casts up to his knees for six weeks. All of these operations were essential to enable him to get closer to the goal of walking, but they inevitably had a physical and emotion toil on him. He builds his strength up, loses it after the operation, then has to build his strength up again while adjusting to the changes in his body. Covid-19 contributed to his frustration as his progress was hindered when all of his therapies were cancelled during lockdown, with only one physio able to see him.

Sebby works so hard, as most disabled children do, and he’s an amazingly resilient kid. Each week he does physio, strength training, sports, counselling and lots of work at home. We also spend most school holidays doing intensive therapy. Life is difficult. With all this hard work it’s important for his mental health to have a lot of fun. As a treat for four operations in seven months, we took him to Legoland.

Sadly, instead of being a happy occasion, he left feeling inferior and humiliated. On the ride Sebby was most excited about – Ninjago – he was forced to leave his wheelchair and take three steps in front of a busy queue of people. Amazingly he did it, but then was asked to leave the carriage and do the steps again. The ride which should have been a joy, was tainted. “Mummy, why would anyone make a disabled child walk?” he said afterwards. “It was hard, I

didn’t want to do it, and it’s made me very sad.” My fury towards the way he had been treated turned to heartbreak for the pain he was suffering.

On another ride we left his wheelchair and put him on his dad’s shoulders, where he looked like any other kid. He was not asked to do the steps. We wrote about his experience on his Facebook page – Sebby’s Adventure – where we share our positive outlook about his operations, difficulties and successes. We were overwhelmed and shocked to hear from so many other disabled families, sharing their similar experiences across a variety of theme parks. I couldn’t let Sebby or Lottie – who has been dragged to his many hospital and physio appointments since she was two weeks old and lay in his hospital bed after his operations, checking he’s ok – think this treatment was acceptable.

We were convinced Legoland could make a positive change, without disadvantaging able-bodied people. We created a successful petition to parliament, achieving 27,500 signatures, leading to our supportive MP Siobhan Baillie making a speech in Westminster Hall. We also asked the fantastic specialist disability solicitor Chris Fry to have discussions with Legoland.

After a lot of campaigning, Legoland engaged positively with us. They have now changed their policy and committed to looking into further improvements, including ensuring new rides are accessible. Children like Sebby are now able to access all but one ride. We’re incredibly proud of Legoland and call on other theme parks to follow their example.

Sebby and Lottie are happy kids, with an extremely unusual start to their lives. Sebby has a terrific carer at school and loads of friends. We have met wonderful people who help him get stronger, and organisations that adapt to include him, enabling Sebby to have fun. We’re forever grateful.

He continues to improve regularly, and often amazes me when he suddenly succeeds on a physical challenge he’s wanted to overcome. He’s just walked with his sticks in the sea and across the rocks, something which a few months ago seemed impossible. We don’t know if he’ll ever be able to walk without aids, and suspect he will always be disadvantaged, but his mental strength and resilience will help him in everything he does.