Thank you for visiting my JustGiving page.
My name is Angelina and I am 11 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 11 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 has improved my foot position but doesn’t stop my muscles tightening.  

In December 2020 I had Botox injections in all those muscles affected, this is something I’ve been having once or twice a year since the age of 5.  It really does helps but is only effective for approximately 12 weeks so now I’m beginning to feel them tightening again. 

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 9 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 this challenge to help raise awareness of Sturge Weber Syndrome and funds to support the charity that supports children and adults like me, and I hope I’m able to achieve my goal of walking 30 miles in 30 days despite  my weakness.   

I look forward to sharing my progress and updates! 

Angelina