Image: Kieron Sales Learning to live in the moment is no mean feat. But when you have a child with a long-term health condition, not focusing too far ahead often
We know how first-hand how powerful technology is in bringing people together. So when we heard about The Cambridge Rare Disease’s virtual festival, RAREfest20, we were really excited. RAREfest, happening
What it really means to be ‘wired differently’. An insight into the world of neurodiversity. Have you ever considered what it would be like to live in a world
If your child has complex health needs, you may be familiar with the NICU rollercoaster. The fear, love, confusion – the navigation of unchartered waters. Having had my own NICU
My daughter, Poppy, is one in 55,000. She has a rare genetic condition called 18q minus syndrome, which essentially means she’s missing part of the long arm of her 18th
New research by Welsh academics shows that a patient’s pupils can reveal if they have suffered a traumatic experience in the past. Post-traumatic stress disorder can occur when a person
First and foremost, there are no true experts on autism. And, the very best way to try to understand even a little, is to listen to autistic people. This will
‘There is nothing that can be done to bring my beautiful baby boy back. But I want to make sure everyone knows about the devastating complications of pre-eclampsia, and what
We were fully expecting to be contacted and told to shield. My six-year-old son Sebastian has Duchenne Muscular Dystrophy, a progressive, life-limiting muscle-wasting disease. Pre-lockdown, the term shielding didn’t mean
Four in five people with autism struggle to sleep, according to new research commissioned by the National Autistic Society and bed retailer, Happy Beds. A staggering 70% of those who
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