We traveled over to North Wales last week to attend our second Amy and Friends Annual Cockayne Syndrome Family Conference.
My son, Knox, has a severe form of Cockayne Syndrome. It’s a terminal condition that is causing him to age faster than normal. Instead of growing, gaining weight, and reaching new milestones, he stays small, fails to thrive, and deteriorates. I’m grateful to be connected to other families around the globe who are traveling this difficult road. Amy and Friends is a registered charity in the UK that aims to support CS families, as well as fund crucial medical research which will one day lead to a treatment for CS.
Each September they hold a retreat at this lovely hotel.
For three days, families from all over the world come together. They all have one thing in common: Someone they love has/had Cockayne Syndrome. There is laughter and love, heartache and tears. Some children are missing from last year and everyone knows there may be some who will not make it to the next retreat. So you hug as many of them as you can, tightly. You try and gain new insight and information from the bereaved families. Many still come to see children who remind them of their little ones that have gone.
The love between the children is amazing to watch. Here’s Knox getting a sweet kiss from his friend from Pennsylvania. Though the form of CS is milder, this beautiful little girl on the right has Cockayne Syndrome.
The severity of the syndrome varies from child to child. Here’s a photo of Amy (the Amy of Amy and Friends) and my Knox. Both have CS but Amy has a milder form and Knox is quite severe. Can you tell Knox gets a lot of love at the retreat?
It meant the world to me when I saw my blog was included on the donor board.
Thank you to each and every one of you who have purchased something from Knox’s little shop. I send it on and it does make a difference! I just recently listed some candy corn cards so check them out here.
Now this was really a thrill! I finally met my blogging friend, Hilary, from Positive Letters, in person!
She came with wonderful British souvenirs and post cards for us, as well as this gorgeous stamp. This is as close to perfect as a gift can get! Many thanks, Hilary!
And then another surprise came! Mrs. Beez came to visit and volunteer at the conference! It was so enjoyable to meet you in person, Lisette! Knox enjoyed his extra hugs and especially loved your sparkly necklace. I hope we can see you again and thank you for the tea and relish! (Take a look at this gorgeous butterfly piece she recently posted!)
And then another friend popped by to meet us! Marg S. came and met Knox and I on Saturday afternoon and we had a very nice visit!
This generous soul took donations for Amy and Friends in lieu of gifts for her birthday! Is that awesome or what?! It was wonderful to meet you, Marg, and I’m so glad you got to meet Knox and some of the CS family. Hope to see you again!
Throughout the weekend there are many volunteers helping the children with fun activities, and then on Saturday night there’s a dinner and dance party featuring some talented and big-hearted entertainers
It’s a beautiful place to be. People are not staring at Knox or any of the children because they look different. All of the children are safe from teasing and ridicule. All the children are loved and made to feel special.
Because they are.
We want to express our sincerests thanks to Amy and Friends for all they do for CS families around the globe. And to all the families we’ve met, we send our love and sincerest wishes for the happiest days possible.
Farewell lovely England, until we meet again!
You’re Amazing. Beautiful words, gorgeous family, Amazing Knox!!! Much love always!!! xoxox
Hi Scarlett – it was an absolute privilege to meet you all and to meet some of your friends from around the world .. as you say they are truly amazing people … and yes learning more about Cockayne Syndrome proved so interesting … I’d have loved to have spent more time with you all.
I loved meeting your two daughters – but seeing you and Knox was very special … I’ll be emailing you – give you time to get over the dread bug (travel cold) …
I love the way the blogging world can take us out to meet talented artists and crafters, musicians as your daughters are, and then special people in life – as Knox is. The internet can be so useful in ways we don’t always appreciate – ie your ability to find out Knox diagnosis … as it’s so unusual.
Delighted the crown stamp is approved of – the shop near the British Museum will be very pleased to know – when I go back, I shall let them know … it’s a stamp that’s not available in the States.
Hope the bugs et al are got over quite quickly – travel takes its toll … it was so lovely to meet up with you … I’ll be posting early next week …
Big hugs to you, the girls and Knox .. Hilary xoxoxoxo
What a wonderful experience for you and your children. I’m so glad it gives you some comfort.
I am so happy that you and the kids were able to attend the conference. What an experience they are able to take with them forever. I can only imagine how the emotions for these precious children go from high to low with the missing ones from years before. Your an amazing mom Scarlett to share your journey along the way. I love you and I thank you for my grands.
What a beautiful place! I’m so glad you were able to take Knox. It’s so comforting to be with others who are going through the same emotions as you, Scarlett. Our prayers are with you always- Ree
Sweet Scarlett,
This is so beautifully written. If I knew nothing about CS or your precious family I would have a good understanding after reading this post.
I am forever grateful that there is a conference for the CS family, that there are brilliant doctors who care and bother to come and share. As much as I can’t stand that you have to be on the journey I am more thankful for each friendship and wonderful connection that is made through CS and your blog.
I’m still glad you’re home and can’t wait to come visit.
I love you.
p.s. Please make something with that fabulous new stamp that I can buy from your Etsy shop. That is priceless.
Kathy shared this link with me. Looks like a beautiful place and how wonderful to be with other families going through the same thing. I have met Knox at the lake and he is just so dear. I admire all that you do for all of your family. Enjoyed seeing you on the news for Make a Wish.
What a great Mom you are, you’ve set a fine example for all of your children to follow as they go through life. God bless you and your family! Give Knox a gentle hug from me, it looks like he was getting LOTS of love and kisses from all the girls. 🙂 I’m so glad you were able to take this trip. Take care, get well.
Glad you all had a wonderful time, and that you are able to connect and be supported by other families in your situation! Definitely helps to know you are not alone!
Knox sure is a ladies man! What a treasure!
Love and Hugs to you all, always. AM xoxo
God Bless all of you! I am so happy you were to go~ Knox is special and so are all of these children-so much love in this post! Hugs to you Scarlett-you are a wonderful mother and have a beautiful family~ XO
Knox is such a cutie!
So cool you were able to meet Hilary!