Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























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Zac By Leslie Edwards, Zac’s mum:

Hi we are the Edwards family. Myself mum Leslie, Dad Matt, Caily 8, Morgan 6 and Zac who would have been 4 on November the 26th, but sadly we lost Zac earlier this year he had Cockayne syndrome. Losing Zac has been incredibly and indescribably difficult. Although Zac was diagnosed with Cockayne Syndrome when he was only 8 months old and we knew he would have a shortened life expectancy, he was doing so well, he had never been admitted into hospital and was on no regular medication and we thought we would have had our little angel with us for a little longer. Zac was born on the 26th November 2007 little brother to Caily and Morgan 4 and 2 at the time. We were very excited to have a new addition to our family. We had no idea there was anything wrong until Zac was around 6 weeks old when he developed some feeding issues. One by one other things happened over the few months that followed until we finally got the diagnosis of Cockayne Syndrome in July 2008. We were devastated it felt like our whole world had come crashing down around us.
We thought that he wasn't going to achieve anything at all but he proved us all wrong!

We were very lucky and had a fantastic group of professionals who were extremely supportive and helped us to help Zac achieve his full potential. We are also blessed with a great extended family who have always helped and been there for us. We were so relieved when we knew for a surety that Zac understood everything we were saying to him and although he couldn't talk he communicated in other ways extremely well. He had the most fantastic facial expressions which we quickly learnt meant he either liked something or not!! He also learnt how to decide between objects of reference and went on to use a switch really well which he adored, as did we. He loved to be snuggled up with you getting loads of attention but was also very happy amusing himself too, he was such a joy. He was always so excited to be around Caily and Morgan and especially loved being snuggled by daddy as he knew he would get away with anything with him! Zac loved music, he loved you to sign with him whilst singing and also learnt how to sign ' more ' which he loved to do at the end of a song and would join in with any actions he could either by himself or with a bit of help. Zac also loved to be in the water ( as long as it was warm!! ) He would spend ages in the bath splashing and having fun. He loved the hydrotherapy pool and loved to do what he wanted to do, splash! But wasn't always so keen when he had to do some work. He went in the huff with a few of his teachers at school after hydrotherapy a few times for making him do hard work. Zac had such a fantastic mischievous personality. He was so cheeky. We would often find his hearing aids in his mouth or in a bowl of water he was playing in or his eye patch screwed up somewhere after he'd pulled it off. His teacher told us one day of when they were reading a story at school and he had to press his switch to fill in a sentence that was repeated throughout the story. He was doing really well and pressing the switch at the appropriate times and then thought it would be funny to just keep pressing it whenever he wanted and laughing!! Zac also learnt to bear his own weight on his legs when he was 2 years old and then progressed onto stepping with us supporting him which he loved to do. He eventually got a walker at school which was great but he preferred someone holding him to walk. Despite all his medical issues Zac was always happy and never let anything phase him. He led a very full life and although he had to do some things a little differently he always joined in with everything Caily and Morgan did and we did together as a family, he quite liked to boogy along while Caily and Morgan would play 'just dance' on the wii for example! I could go on and on telling you about all the things he did and what a wonderful little boy he was. We miss him so much more than we can ever fully describe. Matt’s mum, Linda was the first to get in touch with Jayne through Amy and friends. It wasn't until Zac's last few weeks of life that we started to look for more support from the group. Jayne attended Zac's funeral and has been a great support to us. I attended the retreat with Linda and Caily and Morgan in July and then attended the mums day out with Linda. We were a little nervous about going but are very glad we did. Caily and Morgan had a great time at the retreat and met loads of new friends and were able to talk to other siblings who had been through similar experiences. We also met others who we shared experiences with which was very comforting although difficult. We then met even more people at the Mums day out which was fantastic and has really helped us to not feel so isolated and be able to talk to others who have gone through similar situations.

We want to thank everyone so far for all you have done and the support you have given us. We just wish you could have all met Zac for yourselves. We love him so much, he was such a huge part of our lives that can never be replaced but we are glad of the time we were able to have with him and of the precious memories we will hold dear forever xxx
 

   
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