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Over the next 10 weeks we shall be sharing a challenge of walking 198 miles, the distance between Norfolk and Brighton where each of us live. This is to raise funds for Sturge Weber UK, a charity that first brought us together and who have supported us and our families from the very start of our journeys. We are all still facing unpredictable times due to Covid-19 and are unsure if we will get to see each other this year, so we chose to do this together instead. 

Caity and I have a condition called Sturge Weber Syndrome (SWS).
Its a rare neurological condition, generally characterised by a facial Port wine stain birthmark with similar blood vessels covering areas of the brain. Often leading to Epilepsy or stroke like episodes, Hemiplegia (weakness in one side), Developmental delays, Social and Behavioral Deficits, Hemianopia (Vision loss in one side of the eyes) and Glaucoma.  

At similar ages we both underwent Hemispherectomy brain surgery (Disconnection/removal of one hemisphere) at Great Ormond Street Children's Hospital in a bid to control the seizures caused by  the condition. Thankfully surgery was a success and we have both remained seizure controlled since..

We will always struggle with mobility, especially walking due to the weakness we both have on one side. we will always have limited mobility in one arm and will never have any function or mobility in the hand ever again. our vision on one side of each eye will never come back and to help support the weakness around the ankle and improve positioning to assist walking we both wear an Ankle Foot Othosis (AFO). Social and behavioral deficits will never go away, the constant stream of hospital and therapy appointments are never ending, we have both lost count of the number of MRI's, EEG's and laser treatment's we've had. So I'm sure you will appreciate just how hard this challenge is going to be.

We will be using a mobile app to track our miles and cant wait to share our updates and some live videos with you.

We are both determined to beat this challenge just like we have both beaten SWS, so please please please donate what you can.

Thanks for taking the time to read our story!
Angelina and Caity 

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