Through my work as a highly specialised Teaching Assistant and Personal Assistant, I have had the pleasure of getting to know the most amazing little girl who sadly has this condition. Her name is Ophelia. Every day is a battle for Ophelia who is 1 of just 50 children world-wide with SGS.

Incredibly, Ophelia has exceeded all expectations. At 9 years old, Ophelia is also one of the oldest surviving children with this life limiting condition. She is a very happy, sociable little girl who loves life and has an adorable smile. Although she cannot talk, walk or even sit unaided the infectious noises she makes to communicate with those around her would brighten any day and her cuddles are truly special!

Families caring for a child with SGS face huge daily challenges. These children have many health problems requiring 24/7 care. These include severe seizures, global developmental delay, feeding problems, frequent urinary tract and lung infections, hearing and sight impairment, disturbed sleep and an increased risk of developing cancer. They require multiple daily medications and frequent hospital visits.

It is so important that we raise awareness of SGS and fundraise to support the vital medical research that will improve the lives of children like Ophelia.

The Schinzel-Giedion Syndrome Foundation is committed to support research into life-changing new epilepsy treatments for children with SGS. The severe epilepsy suffered by these children, which often develops shortly after birth, is a major health and quality of life issue. The frequent daily seizures leave them exhausted and unable to interact with the world around them and with very disrupted sleep patterns. Tragically, these severe uncontrollable seizures are often the reason why children with SGS die so young.

There is currently no cure for SGS. But with your help, there is hope that children born with this devastating condition will live longer, healthier and have happier lives.

Every penny helps! If you would like to join Team Ophelia please DM me.