Elias and GOSH

When we first pressed ‘publish’ on the Kidamajig page in March 2019 we didn’t really know what to expect. We never dreamt that we would get to know our customers so well and share their lives with them in the way we do. 

When we searched for our Preloved Pals last summer we picked the lovely Rhianna and her beautiful babies Henley and Elias. Rhianna had been a long time customer and shouted about buying preloved at any given opportunity so her and her family were an obvious choice. She has supported us, spread our message and watched us grow. We never thought we would be able to do the same in return for her. 
2020 was a universally shit year for everyone one way or another. For Rhianna and Karl it was even worse. Elias had already been diagnosed with severe/profound deafness, but this diagnosis brought more tests and investigations to find the cause. 
In October 2020 they got an answer. A rare metabolic disorder called Hurler’s Syndrome (MPS1). A disorder when the body lacks the enzymes needed to break down and store sugar molecules. The consequence of this is progressive damage to the brain, major organs, joints and bones. A disorder with no cure. Hard enough news to take, even harder in the middle of a global pandemic. 
Soon Elias and Rhianna were visiting Great Ormand Street on a weekly basis for ERT (enzyme replacement therapy) as well as appointments with lots of different consultants and specialists. Obviously, in a normal world Rhianna and Karl would have both been able to do this - but covid has meant this has all been on Rhianna whilst Karl and Henley wait for updates at home. 

Whilst this therapy has been going on, and Elias has been beefing up ready for his transplant, his brave family have been having blood tests to see if they have a bone marrow match with Elias. Even Henley - who at the time wasn’t even 3. 
Elias has been incredibly lucky. A bone marrow match has been found, from an anonymous donor. This brave person has willingly given their bone marrow so Elias can have it. I’m sure you will all agree this is an incredible thing to do in normal circumstances. Even more so given the wonky way our world is currently. 

Elias and Rhianna will take the biggest step of this journey in the not too distant future when they check in to GOSH for Elias to received chemotherapy before he receives his bone marrow transplant. Rhianna and Elias will be living in at GOSH as obviously the chemotherapy will leave Elias with no immune system so going home won’t be possible. Karl and Henley will , once again, be at home waiting for news and updates on Elias. 
At the time we write this, only four months since his official diagnosis, Elias has already undergone:
17 four hourr long Enzyme infusions;
4 general anaesthetics;
4 surgeries;
3 daily medications;
17 overnight stays;
And multiple scans, of his heart, bones and brain.

As a parent, I am completely blown away by the strength and positivity that Rhianna and Karl have shown since Elias received his diagnosis. Where most people would let this news crush them, they have taken it in their stride and put their positive pants firmly on. 

Now I feel it is our turn to step up. Rhianna has supported Kidamajig and been an incredible cheerleader. Now it’s time for us to do the same for her. 

So we have had a think about the best way to do this. 
Firstly, we would love to help spread awareness of Hurler’s Syndrome (because honestly, until now had you heard of it?!)
Secondly, we would like to support GOSH as it really is an incredible place providing life changing procedures, therapies and support to families. We all just hope it will never be ours.
Lastly, we would like to help support Rhianna and Karl during the next few months. The last two are where we need you. 
Coming to the shop next will be a shiny new enamel pin badge that we are going to be selling to help raise money for GOSH. We have been working with Katt at Badass Mum’s Club on a design and are really excited to get these underway!
All the money raised from the sale of these will be donated to GOSH, nothing will be taken by us. (We will be sure to update as and when we donate) 

UPDATE - 1st May 2021

Yesterday Elias did something amazing. He got to ring the bell on Fox Ward and finally, after 8 long weeks, go home.

Thanks to GOSH he has successfully received a life changing bone marrow transplant. The journey has been a long process with a fair amount of challenges for him and his family - the side effects of chemo, separation from their support network, a pesky pandemic. He has overcome them all.

We can't wait to see Elias benefit from his treatment and next chapter of this beautiful family's life!