A Carys Update: July 2018 The Sponsored Walk

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

Some of you may remember my recent Facebook posts about the school sponsored walk. In some ways, it’s a bit ironic that a little girl who can’t walk is being asked to go on a sponsored walk. Walking is something we have been working on since Carys was about three years old. We have had many trials and tribulations along the way, but for someone who was never expected by medical experts to even be born alive, she’s doing pretty well!

Besides, Carys’s school is worth it. She goes to the Holy Family School in Cootehill. We are so lucky. The staff, from the teachers, to the kitchen staff, the therapists, the two lovely nurses, the cleaning staff, the bus driver and monitors, they are all totally dedicated to our special children, and there is so much love and joy and happiness in that school. I can’t think of anywhere I would rather send Carys. They have my complete trust.

There is no point doing a sponsored walk, and then sitting in a buggy the whole way round. Carys had to do her bit too. She can’t walk far, and on uneven ground, she needs a helping hand. If you follow this blog, you will know the ordeals she has, and is still, enduring, in her battle to walk independently. The paces she took were symbolic, and emotional.

I want to thank the school for supporting Carys through her education. As you might expect, it involves far more than teaching. I also want to thank those friends who reached out and sponsored Carys; your kindness and generosity will not be forgotten. You know who you are, and when I see you, I will thank you personally; it means a lot.

The school had a wish list for €11,000 worth of equipment, including white boards and sensory equipment. As Carys has multiple sensitivity issues, this will directly benefit her. Your generosity has helped raise €7862.60 towards that list. That’s a phenomenal result from one event.

thank you!


Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease. Waiting for the off with big brother Malachy in charge of the buggy.

Waiting for the off with big brother Malachy in charge of the buggy.

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

Have favourite rainmaker, will travel. Can we just get started?

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

Through the woods…

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

Past the river…

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

Don’t let go, Daddy!

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease The door to carys's classroom.

The door to carys’s classroom… can you see the balloon with her name on it?

Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

Pah! Buggies are for wimps! I can walk to the car! Bye for now, folks, and thanks for watching/ reading my mom’s blog post about me.


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27 Comments on “A Carys Update: July 2018 The Sponsored Walk

    • Yeah… don’t speak to me about Fb, I’m not it’s greatest fan! Thanks Victoria, she is really doing great. 😊 Hugs to you!

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  1. Well done, Carys. What an achiever you are. You’ve made us all proud. As I’m not on Facebook, I never saw the post about sponsoring you. However, if you send me the link then I will be delighted to top up that total for you and the school.
    Hugs to you.

    Liked by 1 person

    • Thank you, Hugh! That would be fab, I’ll put up the link for you. I remember the cockup with FB losing your account, that was ages ago, did it never get resolved? I have to admit I rarely go on FB these days, only to reply to messages, usually, and I only check in once a day. It was sucking up so much of my time. Carys is really doing great. She has been very well in herself and growing in confidence, and well, in size too, but she’s still teeny for her age… she will be 13 this year, a teenager! 😱 Hugs to you, Hugh! Xxx

      Liked by 1 person

      • It got resolved, Ali, but I decided that Facebook was getting far too much time from me, plus there were other things that persuaded me to not go back. I’ve not looked back since and don’t miss it at all, although I realise that many people use it just to keep in touch with family and friends (that’s what I always thought Facebook was for 😀). For me, though, it was eating into my writing time, plus I was getting annoying requests to chat with people I had no idea were still alive and who were telling me that they were in Starbucks, Charring Cross! What’s the point of that? I deleted my account and said goodbye, just before all the truths came out about what data Facebook had been passing on to third parties and such. Phew!
        I’m so pleased to hear about Carys and how she is doing. The fact that her confidence is growing is a wonderful thing. I hope you both have a wonderful summer full of fun and laughter (Oh, and a bit of writing for you, of course). 😀
        Hugs to you both
        xx

        Liked by 1 person

        • I’d love to do away with it too, but don’t feel I can while my page is still growing. My input is minimal though, lol! I don’t enjoy it. I have Whatsapp groups to stay in touch with friends and family… private, no annoying ads or sponsored posts, and no like buttons… you have to actually type a message to interact with someone! 😂

          Liked by 1 person

  2. So cool to see her walking and smiling. 🙂 I hope she’s adjusted to the braces at night and you are all better rested than when you shared your last update, Ali. A great event and how wonderful that your community generously supports Carys and the school. ❤

    Liked by 1 person

    • Thanks, Diana… it is a really good school, and well supported, as you say. They’ve even finally got the go ahead for a new school building, after years and years of campaigning. Work starts in November, which means the school has to leave the site and move into a temporary building at the other end of town. I’m sure that will present its challenges, but will be worth it in the end. Its so hot in Ireland these last few weeks that we’ve been leaving the braces and gaitors off, not a goid decision but she’d never sleep in this heat with all that gear on! Hope you’re having a good summer! 😊

      Liked by 1 person

        • I know, I’m very happy about that. Considering in the past she has been taught in a converted storage cupboard that had to be accessed through the toilets due to extreme lack of space… and I’m not kidding! There was another door but it was through another classroom, so when the children were in it it could not be used so they wouldn’t be disturbed.

          Liked by 1 person

  3. Pingback: A Carys Update: July 2018 The Sponsored Walk - Grace Jolliffe

  4. A big well done to Carys. Ali, how ironical that Carys goes to Cootehill. That’s the name of the place where my wife’s relatives had a farm, or it may have been the name of their farm, but it was about 10 minutes from Cavan – although it took us 30 because we got lost following their can’t-miss-it directions! Everywhere is easy to find in Ireland, but we could never find it. The signage, especially on the west coast, is certainly much better these days.

    Liked by 1 person

    • Thanks Colin. 😊 Cootehill is about 25 minutes drive from Cavan, so I imagine it is the same place. When were you there? We were so close! Now we all have Eircodes for our houses, which you can type into your Google maps on your phone, and it guides you right to the door, so no excuse for getting lost anymore. Yeah, Irish directions are confusing at the best of times, like the old joke, “Well, I wouldn’t start from here.” 🤣

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      • Ali, my thumbs are too big to use a phone and my eyes too old to see the screen…so I am a rare breed of person who’s never had a mobile phone! We went there about 10 years ago. The car we had didn’t have a GPS. The Lynch’s own the property now and they said keep going til you come to the roundhouse and that’s where we are. The roundhouse was their milking shed – which may have been a circular configuration on the inside to milk cows but it was rectangular on the outside. We went sailing by and must have asked for directions near your place to get back. My wife’s distant relative was buried at a church at Cootehill and I think that was near a lake. The relatives my wife has are the Kelly’s at Ballygar and we went back and visited them about 5 years ago. The relative’s farm at Cootehill was on the border and the border was once changed which didn’t go down well with everyone. Anyway, it shows just how small the world is.

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        • Nope, I’ve never heard of a person who never had a mobile phone. I’d say you are a rare breed! 🤣 What a wonderful story! I love that the Roundhouse was rectangular on the outside! Yes, there is a lake, and several rivers near Cootehill, including the Annalee, which became the name of one of my characters in my books. It certainly is a small world.

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