*urgent update 14.5.19/ original post deleted*
As of yesterday things have changed quite dramatically for Alex and us his family. As you may be aware from his previous updates Alex is currently in ICU. We have been told that we have days to weeks left with Alex and for that reason we have decided to no longer fundraise for a cough assist, as it is unlikely we will get Alex back home. Instead we have chosen to dedicate this page and any future monies raised and already raised to donate to the 401 project, which looks to fund research for a cure for mecp2 duplication syndrome. The very syndrome that is taking Alex's life at 25, and numerous other mecp2 warriors sadly aged younger than this too.

Should anyone who already donated for our original cause not feel happy with this change in directions of funds, please contact me via the page and I will look to refund your donation when the total funds are released.

We, his family are devoted to him, he is our world and we cannot thank you enough for your time and support. Our hearts are breaking as we prepare to say goodbye.