TOBY

#31Faces #Face27

Cerebral Palsy Awareness Month 2020, March 27th

Toby is 14-years-old and has Quadriplegic Cerebral Palsy. His Cerebral Palsy effects him in many ways. Toby is a full-time wheelchair user, he says "I am confined to my chair and means I can only go where people want me to go at the pace they want to push me at". Toby is also non-verbal, however he has a yes/no response system. Toby says, "many people do not wait for me to respond or often talk over me".

Toby also has Epilepsy, which has stopped him from attending school and means he can face long hospital stays. Toby says, "Overall, my dependency on others is frustrating - it also means that I am often not allowed too far away from my mother, and at the age of 14 that’s a little bit grating!".

Toby wants people to know that although he is unable to speak, he has all of his buttons switched on! Toby says, "I am fully here despite not being able to talk in the way most others can. It annoys me immensely when people talk over me like I am either not here or not smart enough to make my own decisions. I am 14 and have the mental age of a 14-year-old too!"

Toby doesn't like it when people assume that he can't do certain things. For example, Toby can walk short distances with assistance, stand with his frame, bounce on his trampoline and ride his pony, Betty.

Things that are really important to Toby are his family & friends. Toby's sister is always there to include him in activities such as baking, whilst Toby's brother ensures that he can do wild things such as quad biking and galloping on horses! Toby says, "I am a bit of an adrenaline junkie and love making Mummy nervous with my antics!". Toby also loves all of his animals - horses, dogs, chickens and cats. He likes feeding them every morning and ensuring that they are getting enough exercise as well as petting.

If Toby could change one thing for other youngsters with physical disabilities it would be accessibility. He says he would "make everywhere as accessible as possible with appropriate facilities, especially with regards to disabled toilets. The new changing places are fantastic and give me the dignity and comfort to change that I need. Other than that, I have to be carried and laid on a dirty disabled toilet floor with my chair outside due to space".

In his spare time, you will find Toby riding his pony or walking his dog. He also likes to listen to music, especially George Ezra and Ed Sheeran!

In the future, Toby hopes to be head groom at his brother's polo yard. He also hopes to complete his History GCSE once he has the correct technology that enables him to communicate and answer questions.

Toby says, "Gallop faster than your last seizure!"

© CP Teens UK 2020.

Registered charity - 1172105

 

Website by Ellie Simpson.

CP Teens UK is committed to the safeguarding of children & vulnerable adults.

DISCLAIMER: This organisation & website is run by people with Cerebral Palsy, for people with Cerebral Palsy (and other disabilities). No medical experts or professionals on Cerebral Palsy, or any other disability, were involved in the making of this website.

CP Teens UK

Office 7

The Community HUB

East Stand

Proact Stadium

Sheffield Road

Chesterfield

S41 8NZ

office@cpteensuk.org / ellie@cpteensuk.org