Making memories with Alana

Hi my name is Megan and my partners name is John we are the parents of 3 beautiful children. Our oldest Alana was born with a rare genetic condition called Börjeson-Forssman-Lehman Syndrome This condition has affected a lot of Alana’s organs, for the first 2 years of her life we were always in hospital. She started with seizures when she was 6 weeks old, and completely lost her sight. Thankfully her brain made new connections and now she can see. Alana has a brain malformation that affects her breathing especially at night. Alana has a nippy 4+ vent that she need to be on every night. We currently have carers 5 nights a week to make sure that she’s not sick in the mask etc. I found a charity that said from the age of 7 we could apply for a dream holiday of going to Florida, we were told last year that they don’t expect Alana to see her 20s, which absolutely devastated us as a family. she will be 7 in march but unfortunately the charity has gone bust so I’m here to ask people to please help me to be able to take her on this dream trip and make some memories with her and her siblings like she deserves. Alana is the most precious happy little girl and she deserves all the world and more. I would appreciate any help I can get and sharing this would help. I’m going to save every single penny I can but am worried about her health deteriorating, Alana was in intensive care for 6 weeks a few years ago -and this made us realise how precious are time is with her. I’ve never asked for help before, but I’m swallowing my pride in the hope that we can make this dream a reality.. thanks for taking the time to read this