Bex's daughter Sienna ws diagnosed with West syndrome at 3 months old after having experienced multipe seizures.

This syndrome has caused her to have severe, uncontrollable epilepsy, global developmental delays, partial sightedness, as well as being non-verbal or mobile, with rods in her spine, a VNS implant and a gastrostomy fitted.  

All care is needed to be provided 24/7 for Sienna, and her prognosis means that it is highly unlikely that any of this will get much better. 

At the moment, Sienna is still in school, but soon she will be classified as an adult, and with that, the carefully constructed puzzle that Bex has fought to put together over the past 18 years will be thrown into the air, and she's going to have to start all over again to work out what rights Sienna might still have as an adult. 

This conversation is one you won't want to miss, despite some sound issues and my dog who at the end is desperate for attention!

Bex is an incredibly strong person, who works tirelessly to care for her daughter and ensure that she gets the help she needs. But she also realises that this is a topic that needs to be spoken more about. Because carers up and down the country are exhausted, and their suicide rates are through the roof. 

As a society, we need to do better by the people who need us the most, and it is my sincere hope that by listening to this episode, you'll feel inspired to demand more of our welfare state. 

You can find Bex on Instagram under @motherandmecreativecakes and she's really got some amazing creations going on there. 

As always, you can find me on Instagram under @smallstepstowellness