Who do you care for?
“I care for my 6 year old son, Mylo, who has a rare genetic disorder. Mylo requires attention during the day and night. He has low muscle tone, is hypermobile and is cognitively disabled.”

How does your caring role make you feel?
“At first I really struggled with my caring role in terms of how life-changing it can be and has been. It took a few years to accept how life was going to be and to get used to the change in space, the learning that was required, and to make a new journey in life.

Mylo has taught me a lot, as I spent so long being upset about things he couldn’t do instead of what he could. He taught me how to be more patient and what resilience truly is.”

How does your life run alongside caring?
“I have managed to continue to work full time alongside my caring role but, it doesn’t come easy. It can be a lot of pressure and stress to keep all the plates spinning.

Mylo is very rarely away from me, so I don’t have a great social life or time to spend with my daughter, but we manage with what time we have.”

How have you overcome challenges faced during your caring role?
“I have learned through dealing with things to help Mylo that nothing is easy to deal with, but if you keep going, you will get there eventually.”

What advice would you give to other Carers?
“Do what you know is best for the person you are caring for. You know them best, and they need you to be the best advocate you can be for them, as they need their voices heard. Sometimes it’s not easy, and we wish we didn’t need to fight for half of what they deserve, but keep going!”