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!