Hi All 

I would like to introduce my Amazing daughter Harper, Harper was born new years eve 2019 and was born with a Port Wine stain birthmark that covered nearly 50% of her head including part of her face. We though no more of it and were referred to Great Ormond street Hospital as a precaution.

Following our first appointment Harper was sent for a MRI in June 2020. we received a phone call three days later that turned our world upside down harper was diagnosed with Sturge Weber Syndrome.

Following her diagnosis we reached out to the Sturge weber charity who explained a lot more about this condition and the effects on people.

In August 2020 Harper had her first epileptic seizure at nursery and on the way to hospital had 2 minor strokes, in the days that followed harper had a further 25 seizure the longest being 53 minutes. Following being discharged from hospital harper then started to have drop seizure which could range from 80 – 120 seizures a day

The team at GOSH explained that the medications she was taking couldn’t control the seizures any further and surgery was the only option. In Jan 2021 Harper went in a 9 hour operation to disconnect the left hand side of her brain while this stopped the seizures she was essentially paralysed on her right side of her body.

Fast forward to today we are incredibly lucky that Despite all of this, the 100s of appointments and all the challenges she faces on a daily basis, Harper is a true inspiration, she is a happy girl with sheer determination and will never give up. She inspires us everyday