“I am mum of 3 sons: Tyler (16). Riley (14) & Logan (10). Tyler & Riley were both diagnosed with a rare chromosome disorder called MECP2 Duplication Syndrome at a young age. Tyler & Riley need constant 1:1 care. They’re non verbal, have global developmental delay, daily seizures due to their drug resistant epilepsy and have recently had a gastronomy PEG inserted.

I’m currently going through the Guardianship process due to Tyler turning 16 years old. This is something I knew nothing about until I went to a transition evening hosted by PLUS. Who knew your child turning 16 was such a minefield. Life is crazy 99.9% of the time but wouldn’t life be boring otherwise, and all 3 of my boys like to keep me on my toes.

As a mum of 3 boys, trying to fit everyone’s care needs into a day as well as chasing up hospital appointments, medical professionals, family & friends, and my university studies, it isn’t an easy task and one I do feel quite overwhelmed with quite often. We’re very lucky that we have an amazing team around us made up of professionals, friends and family that we can lean on when needed.

Being a parent carer can be lonely at times. You can feel like no-one else in the world understands your feelings and struggles because for every ounce of your being you love your child and will fight to the end of the earth for them. It’s also an incredibly hard journey for the whole family, and a journey that only another ASN family can understand.

The one piece of advice I’d give any family member of an ASN child is reach out if you need a chat, rant or just cry because, whether it’s a local ASN group page, diagnosis group or your local carers centre, there’s always someone who will listen and/or signpost you in the right direction.

Please don’t sit in silence feeling like you’re alone in the world, because I can guarantee you aren’t the only person who has felt the way you are now. YOU ARE NOT ALONE!