DDX3X SUPPORT UK

DDX3X is a rare genetic condition. The first and only paper on the condition was published in 2015, very little is known about it. In March 2018, Trefoil supported nine families to take part in the first ever DDX3X support UK family meet up. Over the weekend, families broke into groups and took part in different outdoor activities. Many parents admitted that the lack of danger awareness that comes with DDX3X and the impulsiveness of the children means challenging activities are usually not even considered an option for them. The weekend allowed families to bond and share stories of their experience wit DDX3X.  

‘such a non-judgemental and friendly environment. Looking forward to the next one’ Sam

‘I’ve never felt so at home as I did here with you guys. I felt my little family fitted in for the first time’ Sonia

‘hope to see you all again soon plus more of our DDX3X family’ Steve

‘I feel so lucky to have met amazing people I could find something in common with straight away. It takes away a huge chunk of loneliness’ Effie