In April I had a call from the head of my children’s primary school to ask if my two youngest children (who attend the school) would like to present a whole school assemblyย about the medical conditions that are in our family. It would be completely up to us what we said, how we said it and the individual topics that we chose to cover. The head thought that it would be a lovely idea to share their experiences, if they felt happy with that.

I said I would ask them both and get back to them.

I think being an advocate for invisible illness must run in the blood because they could have bitten my hand off when I asked them and they immediately got to work making a power point presentation.

We had a chat and decided to just cover EDS. Talking about EDS and CMT in one go to adults can be a bit mind-blowing let alone to children and with EDS Awareness month fast approaching it seemed the obvious choice. Perhaps they would have the opportunity to talk about CMT at a later date.

The assembly covers;

  • Being Bendy
  • Hypermobility, hEDS and HSD
  • The multi systemic nature of hypermobility
  • We are all different
  • The spectrum of hypermobility
  • The story of ‘The Princess And The Pea’
  • Provisions that help
  • Why the zebra?
  • Prayer
  • Hymn “If I were a butterfly’

On the day (well they actually did it twice, to the infants and the juniors) they presented beautifully. Spoke clearly, acted brilliantlyย and raised loads of awareness amongst the children, staff and governing body.

I’m very proud of their first foray into advocacy.

 

 

What do you think?

They would love to hear your comments, if you have a message please post itย below, it would make them very happy kids ๐Ÿ™‚

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36 Comments

  1. Fabulous assembly from two adorable children…great way to explain it all…

  2. Jennifer Watson Reply

    You must be so proud, perfect shining stars of the future, brilliant and positive children. They got that message spot on and hope our EDS warriors can DAZZLE together, that has made my day. Stay Positive and Stay Strong ๐Ÿ’ช๐Ÿป.
    Thank you.

    • Sarah Wells Reply

      Thank you so much!! They are my superstars. S x

  3. Tara Mundorff Reply

    I live with EDS and CMT too. Some days are struggle but all days are gifts ๐Ÿ’—

  4. That was so amazing! Their confidence and ease of speaking about their medical lives is incredible! I was SO shy about EDS as a kid, but definitely wish I would’ve spoken up more about it in youth. I love that they have such a strong family support system – you can really see that shine through in their assembly. You are raising amazing, brave and caring kids. Keep up the great work!

    • Sarah Wells Reply

      Thank you so much Abbey. Our family motto is to be proud of your perfect imperfections. Not everyone is good at everything but everyone is good at something. Growing up with EDS, CMT, CFS (or all three) I think makes them all stronger than most, they have a great outlook on life and most definitely know how to make the best of a situation. I’m going to check out your blog, glad you’ve found your voice now ๐Ÿ˜‰ Sarah x

  5. What brilliant, articulate, courageous, amazing, happy children you have. Not only did they make me aware of the syndrome that I had no idea about to begin with but they stole my heart at the same time. Well done kiddos and well done mom and dad. You are doing something right!

    • Sarah Wells Reply

      Courtney, thanks for taking the time to write such a lovely comment. They are great kids, I’m glad they came across so well and raised a little awareness along the way ๐Ÿ™‚ xxx

  6. Your children laid it out so eloquently! You should be very proud. Gentle hugs from the US.

    • Sarah Wells Reply

      Thank you Bethany, they did so well. Now they want to roll it out to other schools. Don’t know how that will work but you can’t knock their enthusiasm ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ x

  7. Nan Sys: This is so wonderful!!! Tell your children a big Well Done!! May I please share the video with friends and family? <3

    • Sarah Wells Reply

      Thank you so much ๐Ÿ˜Š, please share, that would be lovely. X

  8. What an amazing thing to do! I wish I’d known when I was young what was wrong. They gave an amazing understanding and attitude towards eds, well done!

    • Sarah Wells Reply

      Me too! so much would be different for me now if I’d known what I was dealing with as a child. All my kids understand what’s going on for them, and why, but just get on with it with a big smile on their face. It’s the best way isn’t it!?! ๐Ÿ™‚

  9. Tara Hewson-Hodges Reply

    Absolutely Brilliant, so perfectly explained in a way for everybody to understand & they did it so well! ๐Ÿ˜€

  10. Hayley Airzee Reply

    I’ve just replied on one but can’t find it now grr lol…so..I’ll say it again…
    Wow!!
    What an incredible video!
    You guys are so brave!..its just given me goosebumps ๐Ÿ˜‚,
    Also your pictures at the end are amazing,what a beautiful family you are ๐Ÿ™‚
    Can I share this? X

    • Sarah Wells Reply

      Oh Hayley, thank you so much my lovely. Please share,lets get the message out there. XXX

  11. My goodness, your children were utterly amazing. Found this through a friend’s Facebook post. Am so glad that I clicked the link. I knew nothing about EDS. Thank you – and them – for informing me!

    • Sarah Wells Reply

      Thank you so much for watching! I think that it’s really important to raise awareness about these rare or rarely diagnosed conditions, it may just be rubbing off on them too ๐Ÿ˜‰

  12. Fabulous. Fantastic. Informative. Interesting. Personal. These young EDS warriors presented their assembly in style and with dignity! You should be awfully proud of these youngsters. Well done.๐Ÿ’ฅ thanks for sharing!

    • Sarah Wells Reply

      Thank you so much Rita, we are so proud of them both! X

    • Sarah Wells Reply

      Thank you hunny, they are both my little superstars xxx

  13. Amazing such great kids sharing so much information.
    They have done so well

  14. I enjoyed watching that! Lovely children and very informative. Pitched at the right level so their peers understand what we go through on a daily basis. Well done!

  15. That was beautifully done and captivating! Very well down and very well brought up kids ๐Ÿ™‚

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