“Hey my name is Georgia, I’m 29 years old and I was born with H.I.E. in June 1994 resulted in pvl and quadriplegic spastic athetoid cerebral palsy and I need 24 hour support for everything that is provided by my parents and care team. I love music and even have my own radio show every month. 

What would I like people to know about H.I.E and Cerebral Palsy?

I would like people in the wider community and in the H.I.E. community to know that having an H.I.E. event or Cerebral Palsy doesn’t make the person who has either condition/both conditions unable to be a person who has likes and dislikes and hobbies and interests in their life. They will just need support to get where they want and find unique ways to make stuff happen.

What advice would I give to someone who’s children have been newly diagnosed with H.I.E. or Cerebral Palsy?

It does get better with time because you get used to dealing with the symptoms of H.I.E/Cerebral Palsy and you will look back at your life 5 years later and see the difference between the two stages. You will also become the expert in your own child’s life, medical people will always suggest something to try that they think is going to help your child, but they don’t live with your child 24/7 and you’re allowed to have an opinion.

How has H.I.E/Cerebral Palsy affected my life personally?

H.I.E. and Cerebral Palsy has without doubt had a profound impact and effect on my life. I’ll be completely honest with you that severe cases of H.I.E. or Cerebral Palsy, such as my own diagnosis, means that I grew up needing full care and support from the adults in my circle of support. While they were all loving and supportive of me and greatly encouraged me to give everything that I wanted to a good go, I’ll be honest there were and are times where I struggle to cope with my need for 24-hour care at the age of 29 years old, although my family and care team are amazing and supportive of me all time. However, on a positive note H.I.E. / Cerebral Palsy has made me the stronger person I am today.”

Thank you so much Georgia for sharing your experience, we’ll be tuning in to your radio show! (You can find it at Access all Aerials).

If you would like to share your H.I.E. experience or have any questions, please don’t hesitate to get in touch.