I am one of the 100 people 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 birthmark, there was a high chance of Ada having Sturge Weber which affects 1 in 50,000 births. Sturge Weber can bring a wide range of problems such as seizures, stroke like symptoms, glaucoma, learning and development delays.

Due to the rareness of the condition, there is no dedicated Sturge Weber charity in Ireland but thankfully Sturge Weber UK have provided us with so much help and information and have welcomed us into their community with open arms.

This year, myself, my husband Andrew, and a number of our family and friends will be supporting the fundraising by keeping ACTIVE in April by either walking, swimming or hiking.

The following people and I have all set individual targets of kilometres to achieve during April through walking or swimming:

Antonia Cowan, Natasha and Alan Bramble, Aaron and Michaela Greene, Leticia Whelan and David Nolan, Paul Cowan.

The following people are going to hike and climb Ireland’s highest mountain Carrauntoohil in Co. Kerry on April 13th: Andrew Cowan, Andrew Maguire, Gavin Ryan, Stephen Smyth.