Family Experiences

Facebook comments

Avon Tyrrell weekend 2015

“Thanks to everyone for a great weekend. Kids are suitably exhausted!”

Daniel Madge…

“I can’t agree more. What a fabulous charity with amazing volunteers. I also have to thank the other parents and kids for teaching us so much about JIA. Will miss you all xx”

Craig Sutton…

“Thank you too all the committee and volunteers at CCAA. This weekend is a life line to many of us and a unique experience for our children. It will be a lifelong memory for them! My two have gone to school tired and happy with their certificates to show their class. Fab to meet so many SuperMums and SuperDads , thanks you for sharing your experiences and all the fun x Good luck to everyone who has come home with a long action list!”

Nicki Brown…

“Thanks everyone and CCAA, a great weekend. Kids had a great time as did we – came away with loads of tips. Reassuring to know we all go through the same emotions. Fab charity.”

Trudi Else…

“My kids say they want to go back next week!”

Vicky Pombo…

“Thank you all for making this weekend such a great time…we all really enjoyed it xx”

Karen Deacon…

“Alex loved it. He’s come away so happy and with so much more understanding of his JIA and he knows he’s not alone now. Thank you so much CCAA. Amazing people amazing charity. And yes a reunion is needed!”

Lynda Martin…

Parents Feedback

Hollowford weekend 2014

“I wanted to say a huge thanks for all the hard work you all put in to running the weekend at Castleton. My son had an amazing time and it was wonderful to see him sharing experiences with the children in the same boat as him – I will remind him of the good time he had when he wakes up stiff as a board tomorrow morning! The parents sessions were fantastic for us and I feel much more empowered to ask informed questions with the consultant and the SENCO – I now realise just how much information we were lacking. I am sure it must take a never ending amount of time to organise, not to mention the money, so thank you from the bottom of our hearts.”
Rebecca Yates, parent

Bens Simmons

(Researcher at University of Oxford) Comment on Twitter

“A lot of the young people being interviewed for the Youth Heath Talk arthritis project speak very highly of your weekend!” @BenSimmons_HERG

Facebook Comments

Avon Tyrrell weekend 2014

Thanks SOOOOO much......

“Thanks SOOOOO much to Sue Wescott Amy Wescott and huge thanks to Jazmin Scarlett and her brill parents too and all the amazing and fabulous peeps at the CCAA weekend. I never thought I d see Amelie so happy and so active and I’ve met some wonderful people that have made this whole journey feel slightly less daunting. If you get a chance to support this charity or go on this weekend I’d highly recommend it! The kids have a blast, meet great friends and get to stay up late and the parents take part in invaluable talks that are amazing and so helpful. Loads of siblings there and they get completely included. Amelie said she’d never had a better adventure than she has this weekend.”

Caroline Sheikh

It was wonderful to meet such lovely families.....

“Echo everything you’ve said Caroline Shaikh. Well done CCAA for organising a great weekend! It was wonderful to meet such lovely families who are going through the same thing. I hope now we can all keep in touch.”

Amy Graham

Good fun....

“Absolutely chaps. Good fun, lots of helpful information. Great people!”

Ronnie Bastone Giles

Amazing weekend....

“Amazing weekend, thank you so much to everyone involved.”

Claire Frearson

I totally recommend this weekend anyone who hasn’t been....

“Thank you CCAA all so much. we have learned sooooi much, met so many nice parents and children this weekend. the kids had a great time, they had so much fun and have both been talking about their weekend and the JIA talk sessions. i am ready for SENCO tomorrow and the non-buggy walk to school challenge in the morning. i totally recommend this weekend anyone who hasn’t been, it helps answers a lot of questions and we feel have the knowledge now to improve our daughters future. thank you, thank you, thank you!”

Jo-Anna Jobling

Well done CCAA!....

“It was a fantastic weekend! Rosie had such a brilliant time and really enjoyed meeting other children going through the same thing. It was so nice to meet you all and your lovely families. I really think that when it comes to dealing with arthritis, knowledge is power so it was wonderful to have access to such expert knowledge and experience. Well done CCAA!”

Louise Jupp

Thank you e-mail from the Hill family

The Hill Family…

“Dear CCAA, Thank you! Actually…that doesn’t really go far enough. I feel like my family have been in therapy!

“I have to admit, I arrived on Friday with some trepidation – it’s not really us, this support group thing- What will everyone be like? Will it be a bit depressing? Will people want to talk to us?

“The sun was shining, Avon Tyrell was such a beautiful setting and we were warmly welcomed in the car park by Brenda. It might just be alright.

“By the time we’d exchanged shoes (ice well and truly broken with Alan’s help) we had made new friends – I refer to James and I – the kids were doing likewise out on the terrace playing games with all the other children. And that set the scene for a wonderful, relaxing evening. Bar open, sun shining, kids playing, parents laughing and getting to know each other watching our children play together as though they had known each other a lifetime as the sun went down.

“Saturday brought immense fun for the children – our son at four and a half went off to the penguin club to embark on a day of mini-best adventuring and pond-dipping, our daughter Freya, 9, with a long history of JIA was sore from the previous evenings fun but keen to keep up with her group activities of archery and kayaking! Well supported by the lovely CCAA volunteer leaders, she had a wonderful day, while James and I attended talks by a rheumatologist and our own specialist nurse. The content was excellent and useful to those just beginning their JIA journey as it was to us some way down the road. The group became more keen to ask questions, felt relaxed enough to contribute and share their experiences.

“After lunch with our children, we attended konrad’s talk. The best for me personally, he engaged us all in the process of exploring and validating our feelings as parents of children with a chronic illness. At times a little emotive, I hope all would agree it was a supported, convivial environment in which to share fears, open up and discuss our experiences, frustrations, helplessness…

“Barbecue and family quiz ( and a slightly earlier night!) all round before another day of fun for the children and an informative presentation by a physio and occupational therapist, again excellent content prior to our final lunch together with our new found friends, it was about this time I had an awful feeling of dread. We had to leave. I can only explain my feelings in this way;
“but we’re safe here”

“We had spent two days surrounded by people who truly understand. Who share our fears, anxieties and helplessness. These people live our lives, I don’t have to explain myself, they just know already.
This support group thing, it’s alright. I didn’t realise how much we needed it, until we had done it. I truly feel blessed to have shared that weekend with so many wonderful families, who’s lovely, polite and incredibly brave children inspire me so much. I am so grateful to them all – they made our CCAA weekend very special and we will remain friends with many.

“I am so grateful to the committee, especially Jazz and Amy who bravely shared their own experiences for our benefit and Amy’s lovely family who have undoubtedly carved us an easier path in supporting our daughter as she grows up with JIA.

“Thank you all so much, you are a very special group of people who I am privileged to have met and shared this experience with. I look forward to a long relationship with the CCAA and hope I can support the charity in many ways going forward.

“With grateful thanks from the Hill family.”