Hello, and welcome to the FIRST and ONLY global charity in support of 'Blepharofimosis Ptosis Epicanthus Inversus Syndrome' (BPES), 'Ptosis' and 'Marcus Gunn Jaw Winking Syndrome' (MGJWS).
We are a UK registered charity. Our Charity Commission number is 1211355.
life with eyes wide open
ABOUT US
We are Vanessa and Miguel, parents to Emilio. Emilio is our first born and was born on 6 July 2023 with Blepharophimosis Ptosis Epicanthus Inversus (BPES), the first known case in either of our families.
Emilio was born with a severe case of BPES and, left untreated, it would have caused poor vision, bad posture, potentially social anxiety, low confidence and bullying. We decided to find a surgeon to help open Emilio’s eyes, and luckily we found the best surgeon who has helped Emilio and changed his life forever.
Unfortunately, this surgery is not an option for thousands of BPES babies, children and adults for many reasons. Lack of access to correct information, informed doctors and pediatricians, and money causes some carriers to have bad surgeries that make the problem worse, causing scarring and the need for multiple surgeries, inflicting trauma and lifelong pain.
For me it is simply astonishing how little advice, help, information and resources are available for families.
We are here to change that – to be the voice and representatives, build a community, host events, spread information and awareness and, most importantly, raise money for every baby, child and adult to access the best quality surgery.
If you, or your child has BPES, Ptosis or MGJWS, welcome to our website and we hope you find everything you need here. We hope to meet you in the future!
What We Do
01.
— We Find & Fund
We find remarkable individuals and corporations who want to help, and we raise money for more babies, children and adults to have the best surgery available to save their vision and improve their lives.
02.
— We Build Networks
We connect unrepresented individuals with BPES, Ptosis and MGJWS through events and global gatherings to help people find a safe space and others who understand them.
03.
— We Strengthen
We help children and adults who have suffered bullying and have had their confidence negatively affected by living with these conditions by connecting them to professionals that can help them rebuild their lives.
04.
— We Educate
We speak to doctors and pediatricians around the world who are not aware of these conditions and educate them so they can better advise their patients.
05.
— We Provide Care
We provide advice, support and resources for families discovering these conditions so that they get the best and most suitable help for their child.
06.
— We Spread Awareness
We organise regular events to raise awareness as we work towards our goal of 1 million people learning about these conditions through our work.
Impact Stories
We had never heard of Blepharofimosis before our son was diagnosed at 6 weeks old
Emilio is my first and only child, and he didn’t open his eyes for the first 6 weeks. We were very worried, but our local pediatrician didn’t know what was wrong with him.
A Brighter Future — For Our Children
We saw 6 different pediatrician and oftalmology specialists in the UK who each gave us different and incomplete information before discovering the best surgery available for our little girl.