Thank you for visiting my JustGiving page.

My name is Angelina and I am 14 years old. For those of you that don’t know me, I have been affected by Type 1 Sturge Weber Syndrome since I was a baby. Throughout  the first year of my life I had daily uncontrollable seizures which my doctors found hard to stop. I wasn’t reaching milestones and I spent a lot of time in hospital, which must have been very scary for my mum, dad and older brothers.

When I was 13 months old I underwent brain surgery at Great Ormond Street Children’s Hospital in London to try and stop the seizures, known as Hemispherectomy (Disconnection/removal of one side of the brain). For me it’s the right side.

This June marks exactly 14 years since my operation  and although there’s always a price to pay with this type of procedure, I remain seizure free!

I have a weakness down my left side, known as a Hemiplegia, My muscles easily tighten which causes a lot of pain. I have very limited mobility in my left arm and no mobility in my left hand.  To support my ankle I wear an Ankle Foot Orthosis. 

In 2018 surgeons tried lengthening my tendons, this improved my foot position for a few years but unfortunately my muscles continued to tighten.

For the past few months I’ve been virtually unable to walk due to this and have been reliant on my wheelchair. On Thursday 18th April I will be having Botox injections again in the muscles affected which will hopefully allow me to have a bit more mobility.

Type 1 means, the extra layer of blood vessels on the right side of my brain also appear on my face . This is known as a port wine stain birthmark, because of this, I’ve undergone 10 laser treatments to lighten it, its not nice having the treatment as I have to be put to sleep and it can be quite sore afterwards.

I have decided to take on 30 miles throughout this month to help raise awareness of my condition and vital funds to support the charity that supports children and adults like me, I hope I’m able to achieve my goal despite my own challenges.

I’m not always comfortable around too many people and sometimes struggle to leave my house but I’m determined to conquer all my fears!