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Cerebral Palsy Awareness Month

Amanda O'Neill by Amanda O'Neill Additional Needs

Amanda O'Neill

Amanda O'Neill

I’m Amanda, I’m 25 and mummy to my little angel Ryan who has quadriplegic dystonic cerebral palsy. I never knew in life what i wanted to be when I...

March is cerebral palsy awareness month, a time to spread awareness and love for all the people living with this condition.

As you all know sadly it’s what my little boy Ryan lives his day to day life with.

This is due to no control of his own or my own.

Back in 2015 when Ryan was brought into my life and at the young age of 21 I never knew what Cerebral Palsy was, let alone believed that I would have been a Mum to such a beautiful little boy fighting such a massive battle.

I am now 25, a full-time mum, career, Physio, nurse and whatever other job role fits, to my son... Not qualified of course but after 4 years of doing it, I may as well be.

I lift and lay him, change and clothe him, feed him via gastrostomy mickey button which I will change myself, do his daily Physio with him, administer drugs and every other job in between alongside his amazing daddy.

Ryans full CP diagnosis is level 5 quadriplegic mixed dystonic/ spastic Cerebral palsy.

To simplify this, this means his whole body is affected.

His body tone goes from stiff and ridged to loose and floppy and he cannot control his movement.

Cerebral palsy comes in all shapes and sizes and no 2 people living with this condition is the exact same.

Ryan cannot talk which makes him nonverbal, he can, however, tell everybody what he wants in other ways by shouting, smiling and moaning.

He cannot walk and by the looks of it will not walk as his left hip is completely out of place.

He requires specialised seating and a standing frame.

Ryan cannot eat due to an unsafe swallow this is caused by his inability to control his muscles; which is why there is a mickey button.

He cannot sit as his muscle tone is all over the place, he has epilepsy and has both hearing loss and vision problems.

Ryan is fully dependant on myself and his dad and will continue to be for the rest of his life.

However, the image you have no doubt pictured in your head of him is not a true representation of the little boy he is. He is just like any other 4-year-old boy.

He loves to carry on, he loves the rough and tumbles. He loves to be tickled and be made laugh.

He has the same wants and needs, the same expectations as any other person.

He wants friends, he wants attention. He wants to be accepted and loved for just being him.

Cerebral palsy awareness month really is important to our family because it allows us to educate the world about children, teenagers, and adults just like Ryan.

I think when you live a life with no difficulties it can sometimes shadow the fact that there is in-fact people out there who are living their everyday life with CP.

When I advocate about Ryan’s condition it’s not to look for sympathy, I don’t want people to think I’m a hero mum.

I just want people to be aware of the condition that globally affect approximately 17 million people.

Health is a thing many of us take advantage of .

We take being able to wake up and just do what we want for granted.

To help make a difference to those living with cerebral palsy why not let others know about this condition, help spread awareness about these amazing 17 million people so that the future can be more understanding and brighter.


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