Hardest search yet...

I've just spent the last few hours finishing off a new search we are starting today. All searches are important. SOme can mean a child will drink or not depending on the outcome, some are not medically important, but emotionally they are vital for the child's well-being.

This search is for Jake, who has a rare metabolic condition with only a handful of other diagnoses around the world. Jake is 12, he was never supposed to reach 5.

Jakes mum has given me full permission to make the search emotional, as that will decide the outcome we believe. This is an old bottle we are searching for, and it makes Jake very happy. Without it, all fluids will go through his tube as he just refuses to drink, and that will impact the quality of his life even more, as well as increase the risk of illness and complications.

I wrote it, I checked it with his mum, I then posted it to our website which is slowly coming together. After putting the final picture on I had a look at the finished search.

I cried a little, even though I had written the thing and seen the pics and knew the story. I cried not because it made sad reading, I cried because I know how hard this search will be, and just how bloody important it is.

Heres the post, you will find the search on the main page once I put it up later this evening.

https://www.littlebluecup.org/share-to-help-jake-please/ ... See more

Visit the post for more.

Sometimes people are just so kind and generous. I use a site called Fiverr to purchase designs, support for the website, stuff like that. It all starts at $5, you pay more depending on the details.

I found a really lovely guy in Bulgaria who has done all of the social media designs for us. He finished the last banner on Twitter and then asked if he could help with the website. For free. Because of what we do.

Before his generous offer I had posted on Fiverr asking for help to build the site. You get people bidding for the job. I had one guy called Jordan who messaged the Page here saying he had found us and loved what we do and wanted to build the site for us. For free.

Amazing isn't it. People going out of their way to help us to help others.

I just wanted to publicly thank both Ati and Jordan, although currently I can't get hold of Jordan to get started but I really appreciate his generous offer.

In a World where the news is full of so much hate and horror it's so important to remember that the vast majority are lovely, caring people. So many want to help others. So many want to help make a difference. ... See more

There isn't much you can teach me about motivation and getting motivated. I think I swallowed the manual and I help anyone to get motivated....

....But I just can't motivate myself to get on with this blogging thing and do it properly, taking it more seriously.

I think part of me is worried that it won't be interesting, but ultimately I've explained that this Page is all about my life with my kids and setting up and running the LittleBlueCup Project. I just need to get on with it.

Hence this post. A bit of an explanation I guess, and I am going to do my best to post at least once a day if not twice or more, though some will be shares of stuff I find and like.

I'm really struggling to get the website up and running. I know what it needs in it, I need to write the words and I need other people to make it look lovely and all work properly. And I must not touch the settings and break it. Again...

The website is so important and once it's up it will be easy to maintain. Maybe I'm thinking too big and I just need to get the basic few pages up and the rest will follow.

I wish I could design websites properly, but I don't have the time, energy or patience to learn. I guess I need to use my skills in areas where they will be useful rather than trying to waste time not doing what I should by learning something I simply don't need to be able to do! ... See more

I worry when I say 'Autism Research' as most people think I mean researching 'mythical cures' as some other organisations that shan't be named pretend to do.

Autistica's research is important, no, vital for our children's futures, people need to understand research comes in many forms, and just how important it is to make a difference. ... See more

"Autism research doesn’t have to mean science." - it's so important that autistic voices are the loudest in research.

It's long overdue that this was taken more seriously and we tried to understand Autism in girls to help with diagnosing and support.

This study shows we don't know enough about autistic traits in girls and women:

Anxiety is very real. You can't 'just get over it', and a 'bit of fresh air' won't make you feel better.

If you know someone with anxiety talk to them, ask how you can best help and support them, what they need, and if they could do with some support at certain times.

Knowing people know and understand does help, it goes a long way. Feeling loved, cared about, and understood are massively helpful, potentially life changing.

Anxiety can take over anyone's life at any time without any notice. Try to understand the symptoms and maybe some day you could help someone when they need it most.

Marc x ... See more