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SMA UK - Resonate 2023

Hi everyone,

Hope you’re all well!

A little over a week ago I spent a long weekend at the Calvert Trust in Exmoor with my PA Mechelle for Resonate 2023, this was an event held by the charity SMA UK to bring together a group of twenty adults with Spinal Muscular Atrophy for an adventurous weekend, doing activities I for one never thought I’d be able too! The group ranged from 18 years old to around 60 so it was nice to see how everyone’s lives are panning out as were all at different stages of life. This was the first event held by the SMA UK charity I had attended as an adult so I was apprehensive going into it not knowing what to expect, but overall was pleasantly surprised.

Our journey began early on the Friday morning as we set off on the 215 mile journey down south to Devon. Once we arrived at the Calvert Trust we checked in and were taken to our room, it was upstairs on the outside courtyard which was really pretty when it wasn’t raining! The venue was very convenient as everything was in a short walking distance, the only down side was how bumpy the paths were. It was a decent size room for me personally and had two beds (including a hospital bed for me) and Mechelle. The trust does offer rooms with ceiling track hoists as well as mobile hoists, but it wasn’t necessary for me. The only other negative of the weekend was the size of the shower and the shower chair which didn’t cater for my needs, if I did want a shower it would’ve been very difficult for my PA to assist me.

The first evening was spent meeting new people, I was very lucky to meet the loveliest people (The Cripple Club) on the first day and then spent the rest of the weekend together. As it was the only day that rain wasn’t expected we made the most of the dryness and went for a walk down to the Reservoir, the walk was very long and bumpy through the woods but when we made it to the bottom the views were worth it! The trust also had a veranda that looked over the beautiful Wistlandpound Reservoir and the surrounding countryside including their horses, it became our groups base for the weekend. The weekend was fully catered for with three courses prepared for all guests, as I don’t eat myself I can’t comment but everyone seemed pleased with the food offered!

For the next two day’s activities were planned for us, unfortunately due to the heavy rain (we got a month’s worth in one day!) some got cancelled, these included canoeing and biking. Due to the rain we got to choose our own activities which worked out better for me as it meant I could be in a group with my new friends.

The first one we chose was crate stacking, this was where we were hoisted up into the air and we had to work with our pa to try and stack milk crates as high as possible without falling. The staff were all incredible and always made us feel safe, I used a sling which supported me well. Going into it I felt anxious how my head would be supported due to my lack of neck control, but they added an extra head support, I felt secure the whole time and had full confidence in the team. They had different types of slings depending on how much support was needed. Mechelle and I are both very competitive and did manage to get as high as possible with 17 milk crates, so started the weekend off right! When my friends were in the air they saw horses in the stables ahead, but when we were up in the air there were none in sight, so I was very sad about that!

In the afternoon the group split up as some people wanted to do abseiling and zip wiring but I didn’t really fancy getting soaked in the rain so opted for archery in the dry. Like all the activities the archery was adapted so all abilities could get involved, they put a bow and arrow onto a frame which could be moved on a pivot to aim and finally I pulled a piece of rope to release the arrow towards the target. Overall my aim wasn’t the best but when we were put into groups, I was with Ben and his PA, and our team did win archery snakes and ladders!

In the evening there was a disco but it didn’t appeal to me or my group, so we went to our trusty veranda to talk instead. Unfortunately my night ended with an emergency trip to the hospital as I had been feeling dizzy throughout the day and my symptoms got worse, Ben from the Calvert Trust was great at accommodating and helping me to get the support I needed. The hospital was far less busier than the London ones I’m used too, so I was seen quickly and they said I had something wrong with the crystals in my ears and it was affecting my balance. Thankfully it was not that serious so I was fine to return to the Calvert Trust within a few hours with medication.

The following morning we spent resting as I still wasn’t feeling 100% and with lack of sleep along with the issues in my ear, activities weren’t the best idea. The rain did clear up so I was a little sad we couldn’t do abseiling and zip wiring, but it’s something to look forward to next time! We went to visit the horses in their stables and I fell in love with Bertie, a 24 year old Piebald cob, who was lovely and let me stroke him, and even let us have a selfie with him! I miss the days I used to spend my weekends at the stables helping my Nan with the horses!

Whilst the others were doing their activities I watched the Hungarian Formula One Grand Prix overlooking the reservoir, as Lando Norris crossed the line in P2 for the second consecutive race! My friends went swimming so after the race we went to see them. There was a standard large pool along with a smaller jacuzzi both with hoists to get in and out with. There were also adapted changing rooms emphasising how accessible the whole place was!

In the evening there was a quiz that everyone got involved with where myself, Sophie, Molly, Alisha and Ben teamed up to be The Cripple Club, we proved SMA people are intelligent coming joint winners (I’m sensing a theme here 😊). We then spent the rest of our final evening just talking in our group back in the veranda room.

On the final Monday morning after breakfast it was time to start packing up to head home. Before we packed up the car we went back to the stables to see the horses, there were a lot more than the previous day so we gave them lots of attention before the long drive home. It was sad to say goodbye to the cripple club, but it was lovely to meet them along with Zayneb, Sanah, Hina and everyone else so hopefully it’s not too long before we can meet up again.

As a 20 year old who is normally glued to a screen it was nice to have time away from reality and be in the countryside socialising. SMA UK organized a fantastic trip and hopefully there’s many more in the future.

Thank you for reading

Ellie Xx


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