Hello, my name is Laura and I as well as other friends and family are fundraising on behalf of my friends Hannah and Josh and their beautiful twin boy shae. He is a twin with Luca and they are 9 weeks old. Shortly after being born they were both diagnosed with non compaction cardiomyopathy which is a very rare heart muscle diesease which currently has no cure just medicine to keep them stable for now. Luca has this managed by meds but Shae was also diagnosed with a very large VSD and fluid around his heart the VSD needs surgery to close it but at the moment this is not looking good as he is struggling to maintain his breathing and also his feeds meaning he not gaining sufficient weight. He has had an operation already to place a band around the pulmonary artery in his heart in the hope this would help stabilise his breathing but every day is a battle for him, he can have a good day but then the next day he can dip really bad. We have been told eventually he will need a heart transplant which in England there is very little chance there would be a suitable doner. At the moment we are all just trying our very best to get him to the stage where he can have the VSD surgery to keep him stable until he is old enough for his heart transplant. Shae has spent every day in hospital since his birth and has been separated from his twin who was well enough to be discharged. We are kindly asking for everyone’s help to give this little boy have the best chance at life. We will not give up and will try everything in our power to get him his new heart. We will be do fundraising days and many many more things. Shae is the most loveliest little boy and he deserves to be home with his mummy, daddy, sisters and brother. Any help would be so greatfully appreciated even just a share of this page. Thank you for taking your time to read Shaes story. Any money not used will be donated to Leeds Childrens Hospital. Much love xxxxx