Across the Globe, We Are United in giving our children the best start in life
Who We Are
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 of BPES carriers. This is also the cases for Ptosis in general and Marcus Gunn Jaw Winking Syndrome (MGJWS).
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 charity and website and we hope you find everything you need here. We hope to meet you in the future!
Our Approach
We Provide A Safe Space
We aim to provide a safe space for you to find information, advice, support and resources.
There are different options available to you if you have Ptosis, BPES or MGJWS. Surgery is one route, and there is more than one surgeon we can recommend depending on your location, but surgery is not always the only option. It is sometimes possible to do nothing at all, learn to live with the condition and still lead a very good quality of life.
We are not here to tell you what to do, rather give you different information and resources so that you can make the best decision for yourself and your family.
01.
— Our Mission
Provide information, resources, and advice. Spread awareness, educate the medical community and provide financial assistance for as many babies, children and adults with Ptosis, BPES or MGJWS, that is severe enough to negatively affect their quality of life, to access vision-saving surgery with minimal scarring, and trauma.
02.
— Our Vision
Every baby, child and adult with Ptosis, BLES or MGJWS that is severe enough to negatively affect their quality of life should be able to access the best quality of surgery available with minimal scarring and trauma.
03.
— Our Story
BPES is now in our family, and may be for generations to come, and we want to ensure that parents that come after us have more help and support than we did.