Story
I am keeping ACTIVE in APRIL to raise awareness of the rare neurological condition Sturge Weber Syndrome and vital funds for Sturge Weber UK.
Our daughter Ada was born in November 2021 with a Port Wine Stain birthmark covering nearly 50% of her face. Due to the location of her birth mark there was a high chance of Ada having Sturge Weber which affects 1-50,000 births. Sturge Weber can bring a wide range of problems such as sezuires, stroke like symptoms, glaucoma, learning and development delays.
Ada was diagnosed in early 2022 with Sturge Weber. Although we have had some problems with Ada's eye along the way and live with the constant worry and monitoring for sezuires, stroke like symptoms and development delays, we do have a happy/sassy girl who brings a lot of joy to our family.
I have chosen to walk 60 miles for the month of April to raise money for Sturge Weber UK who have played a big part in providing much needed information for Ada's condition.
Click the link below if you like to know more about Sturge Weber.