Running Edinburgh Marathon In Memory of Georgia and Freya

My brother Lewis and I (Ava) are running the Edinburgh Marathon in 2024 to raise money for DEBRA. We are doing this in memory of our sisters Georgia and Freya who both died in infancy of the rare genetic condition Junctional Epidermolysis Bullosa (EB) Severe. Junctional EB reflects mutations in the genes which should otherwise bind the layers of the skin together, instead causing it to blister and shear at the slightest touch. Sadly it also affects internal linings and affected babies do not survive. This challenge will be our biggest so far and we have chosen to do it in 2024 because Freya would be twenty-one this year. DEBRA provided a dedicated EB nurse to care for Freya throughout her short life. The Charity coordinated pre-natal testing & care and provided invaluable specialist advice to my family and our healthcare providers. DEBRA supported my family practically and emotionally from Georgia’s birth in 2000 to 2004 when I was born. DEBRA’s work will forever be an important part of our lives.