Journal of IiMER Volume 13 Issue 1 Invest in ME Research swimming. I can’t horse ride as much as want to, either. When did you first encounter AV1? I saw on the news that Jade Gadd had used a robot called Bee (her AV1) to assist her with a different condition, then Invest in ME Research asked me if I would like to try an AV1 out for three months. As I was behind at school, my mum and I thought that the robot could help me attend extra hours of school from home, taking the pressure off my education. I got my AV1 in January 2018, and now, Robbie is part of the family! How did your class react to having AV1 in the classroom? It was quite strange at first. Robbie used to get a lot of attention from my class when we were attending the lesson. My class really like him being there, it was the school that named him, and one of the staff members even made Robbie a cape to keep him warm when he's going between buildings! How has AV1 helped you better cope with your condition? If I am having a day where I am feeling very tired or ill, I often don’t feel up to going into school. With Robbie, I can now work from home on these days, rather than having to miss out entirely. This helps me hugely, because to do this, I don’t have to physically push myself too much, which can make me feel worse. Using Robbie is just like being in class, because when I need to get my teacher’s attention I can light up Robbie’s head, just like putting a hand up. I can also put the ‘sleep mode’ on if I want to be in the lesson but don’t feel up to saying too much. Do you think that your AV1 will give you more opportunities for the future? I'm not as behind in school any more, my grades have improved and I feel more confident. This is good because exam work has started for my GCSE’s, so Robbie is helping me to catch up on the stuff that I have missed previously, having been on reduced hours of school for the last 7 years. We were also lucky enough to catch up with Makayla’s mother, Michelle, too. Hi Michelle, how has AV1 changed family life? AV1 has made me more confident about Makayla’s education. When she is struggling at school she gets Invest in ME Research (Charity Nr. 1153730) frustrated and upset; falling behind the rest of the class. By giving her the ability to attend more lessons through Robbie, it gives her more control, which is a massive boost for Makayla. How has AV1 changed Makayla’s education? Robbie has helped Makayla beyond my expectations! When she’s having a bad day she knows she’s not under pressure to go in anymore, because we can send Robbie in. This has taken a lot of pressure off her and having Robbie as a safety net has made the world of difference. She’s not forcing herself to go to school on days when she needs to rest, which in turn makes her worse in the long run. In a way, Robbie is helping her overall health. How has AV1 changed Makayla’s daily life? As a parent, I am always being told ‘you should limit this’ or ‘Makayla can’t do that’. Robbie has really helped to take the ‘you can’t’ away. Robbie has given hope to other children and parents too, as most with ME have had to drop out of education. Aside from education, Robbie helps Makayla see her grandmother. When illness has prevented Makayla visiting her grandmother (for the worry of contagion), a remote visit through AV1 can help Makayla and her grandmother spend more time together. What do you hope for the future? We are hoping technologies like the AV1 will change people’s attitudes towards ME. Clarifying that the illness is not about people not wanting to do things, but it is about them not wanting to be sick. They have had to give up so much. This is a real illness that affects so much more than just their health - it affects life. I’ve been so surprised at how well Robbie has supported Makayla. Allowing her to carry on with her education has made Makayla far more confident. It has also given Makayla had one less thing to worry about: the isolation that she felt and the awkwardness of feeling left behind. investinme.org Page 40 of 52
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