Addy's Batten Adventure
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Social media to U16's in the UK? ... So why do we share Addy's journey?
Since late 2020 we have shared Addy's journey with with horrific disease. The up's, the down's, the challenges, the celebrations, the trials, from each member of the family, and everything in between. But why do we do it?
We don't do it for followers "likes and subscribes", to become famous, or drum up excitement about advertised events.
In the beginning we started to share out of a ferocious fight for awareness. We hoped that this would become a platform for the UK to understand the journey of an ultra-rare disease that robs EVERYTHING from a family; in the hope that when we needed to fight the "people at the top" to allow future diagnosed children the right to live - it was an easy step due to the backing behind us. But what happens now that people have said no?! And not just a "nooooo....but...." what almost feels like a brick wall of hard no's?
We continue to share out of letting friends, family, and other parents of disabled children, (and everyone in between) because the world needs people to share about how we can give dignity and respect to others unlike ourselves through small actions. It's important that people in caring for loved ones don't feel isolated and lonely due to their sacrifice for family members. It remains a way of sharing with friends and family members from afar that want to keep in touch with how Addy is doing but find it a challenge due to timezones, time, technology etc.
And in time when the UK is bringing in restrictions for U16's on social media (which I actually agree with - mostly), we continue to be here not "fighting for attention", but simply informing - hoping that it helps others out there. There may be a times when we ask for actions from those who feel able to, but for the other 98% of the time we hope that Addy's and our story can inspire your's to bring about change in the Adventure you live.
30/04/2026
It's been a while since we last posted, almost 3 weeks infact. Not because we haven't had lots to update you on, but it's simply been too hard to write on numerous levels.
Whilst there were smiles on the photos of Addy's birthday, it was actually one of those moments that will feel like a critical point on the regression timeline.
For years, all Addy talks about is cake. Cat cake, lion cakes, Disney Frozen cakes, dog cakes, cakes cakes cakes. Hayley even made her a laminated book of all her past birthday cakes! What Addy is doing by talking about cakes is she is telling you what kind of birthday cake she wants next! But this year things were different. Despite talking to Addy everyday for a week that her birthday was approaching, when we presented her birthday cake to her we expected a gasp and giant smiles, but nothing....
It wasn't what she did that shook me, but rather what she didn't do. She didn't gasp, she didn't smile, there were no giggles of excitement or trying to pull it closer; just a blank look. Almost a look of utter bewilderment and confusion. Over the years we have noticed that unless events are repeated almost daily, Addy's recognition of the situation has become more distant in her memory and therefore less significant to her. In this moment, it was is she had forgotten what a birthday was. Is was a lack of understanding of what the implications were.
The rest of the day almost seemed like an event that we did for ourselves and Samuel. Like we went through the motions because we wanted to mark the occassion about her, rather than something she really cared about. We opened the presents with her...or more often FOR her. The reality is, there are fewer and fewer things she truly enjoys.
Since then we've been under greater and greater stress. More than we have ever been under and as a result are psychologically exhausted - or atleast that's what the Dr has labelled it when I visited him. It's like we'd have the impetus to do something, and when you get up the biggest wave of "Noooooo, I don't want to...I want to curl up in a dark room" kinda feeling floods my head. It hurts inwardly, it causes the drive within you to stop.
This week I've been so glad for a slower week and have had to "choose to only do the necessary" because otherwise it's too overwhelming.
The unrelenting stress of a parent carer is real, and psychological exhaustion cripples.
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