Thomas, aged 6, is now on his third Mollii suit. His mother, Nicci, tells us why.
When does he wear the suit?
Thomas started using Mollii in 2017 when he was three years old. He had a break immediately after selective dorsal rhizotomy (SDR) surgery in September 2017 for around two months and then we started using it again. We bought a larger suit for him when he outgrew the first one.
Before Thomas started school he’d wear it every second day as recommended and just before physio. Now he wears it for an hour before school at least once in the week and then again at the weekend before his horse riding or swimming lesson.
How do you think it has helped him?
Before Thomas had SDR we could see that his body was much more open and relaxed during a physio session after having just worn the suit. At his recent re-assessment at CPotential, with Orsi’s expertise, we were able to see how it improved Thomas’ balance and gait pattern. His stride was more relaxed and fluid. It was a subtle but significant difference and so that’s why we decided to invest in a larger suit for a third time despite the increase in cost.
What do Thomas and his twin think about the suit?
Thomas says it sometimes gives him a tingling sensation. Once it’s on, though, and he’s busy doing things he is fine. He also says it makes his body feel lighter afterwards. His twin is used to Thomas having to wear or do something, bless him.
How did you find the CPotential assessment process?
I truly value the assessment process. We wouldn’t have invested this significant amount of money again without the expertise and knowledge of Orsi, the CPotential Mollii assessor. She knows our son and how to programme the suit to best support his progress.
I have a great deal of trust in her and her knowledge and expertise of children with cerebral palsy. That’s a rare thing for us to be able to say as many professionals we work with don’t seem to have enough knowledge or expertise of children with cerebral palsy.
Any other thoughts you have about Mollii?
It was a huge decision to buy another suit, especially when we already have to pay a lot for weekly physiotherapy. Before SDR it was such a relief to feel like we were doing something to help Thomas’ growing body deal with the increasing spasticity taking over his body. So much so that we seriously considered delaying SDR as the Mollii suit was clearly helping.
The SDR has definitely been life-changing for Thomas but we value how the suit still helps him. I’m also happy that we chose to get another suit 18 months post-op in order to feel we’re making the most of this window of opportunity while he’s so young.