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10-16 June 2024

Andrew who has ME shares his experience of caring for his son Keiron who has quadriplegic cerebral palsy.

“When our son Keiron was born, the consultant told us about the cysts on his brain and that he would either have problems with his movement or vision. After a year Kieron was formally diagnosed with quadriplegic cerebral palsy and the joys and pain of being a carer really started.  

“I have to say that being a carer is really tough physically and emotionally, but it is also very rewarding. We are so proud of what Kieron has achieved. He is now 24 and an amazing young man. We always said his disability wouldn’t stop us doing things and we have shared many great experiences as a family. 

“I have been lucky that my employers have always been understanding. Working full-time and being a carer can be brutal. I have had time off work for stress, exhaustion and various other combinations, but I'm still winning, just. 

“In 2016, things got even tougher when I was diagnosed with ME. I was struggling with no energy and collapsing on the floor and experiencing violent muscle pain and brain fog to name a few symptoms. But if you think that's bad, imagine how my wife felt having to look after Kieron and me! 

“Having ME has made being a carer so much harder and there are times when I feel useless. We now have professional carers during the week. We say to Kieron, don't worry, if dad is ok, we'll still do stuff, if his ME is bad, we’ll just do it differently. 

“My message to other carers is that yes, it's hard, but keep going, look after each other and never give up. Make sure you get the support you need. There will be worse days than others but in the still of the night when you can't sleep, reflect on all the good times, those that have been and those yet to come.” 

With thanks to Andrew for sharing this story.

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