Through Our Eyes: A mother’s fear, a rare diagnosis, and a lifelong mission

When doctors told Vanessa Rodrigo Jakubowski that her newborn son Emilio had Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES), she was overwhelmed by fear. The rare genetic condition affects the eyelids and facial structure, and Emilio’s case was severe. With no history of it in either parent’s family, the news hit like a thunderbolt. Left untreated, it risked lifelong poor vision, poor posture, social anxiety, low self-confidence, and bullying.

Parents around the world know that same shock when they learn their child has a rare face-and-eye condition such as BPES, ptosis, or Marcus Gunn jaw-winking syndrome. Yet reliable information and affordable treatment are heartbreakingly scarce.

World-class hope on the Costa del Sol

Emilio’s eyes remained closed after his birth in July 2023. After weeks of desperate research, Vanessa discovered that effective treatment options were limited and often prohibitively expensive. Then she found Dr Ramón Medel in Málaga, one of the very few surgeons worldwide skilled in pioneering frontal flap surgery for these complex cases.

At just ten months old, Emilio underwent the groundbreaking procedure. In a single operation, Dr Medel corrected the most severe aspects of the condition with minimal scarring and outstanding results. Treatment continues today, but the transformation has already been life-changing.

From personal crisis to global charity

The more Vanessa learnt, the more she realised how many families were facing the same isolation and financial strain. Determined to help others, she founded Through Our Eyes, the world’s only global organisation dedicated to BPES and related rare eye conditions.

Registered in the UK (charity number 1211355), the organisation provides more than financial aid. It builds a supportive community through online meetings, global gatherings, emotional guidance, and practical resources to combat bullying and boost children’s confidence. Vanessa explains the urgency: “It’s officially classed as a ‘rare’ condition.” However, when she revealed the numbers to Euro Weekly News, they showed it’s far more common than people think. Some critics say, ‘€18,000? Just pay it.’ But most families simply don’t have that kind of money, especially when treatment can last years and costs add up.”

She also pushes for systemic change: “What about my grandchildren? Will there still be a Dr Ramón Medel for them?”

Global reach, Malaga roots

Fundraisers have already raised thousands of euros. The charity’s ambitious campaigns hope to reach and inform one million people, helping both families and medical professionals recognise and treat these conditions earlier.

In 2026, Through Our Eyes plans to forge new partnerships, particularly in the Costa del Sol area, while continuing to expand its network of knowledge, support, and hope.

How to get involved

• Visit: throughoureyes.net
• Follow on Instagram: @throughoureyes_bpes
• Watch founder stories on YouTube

Emilio’s story is no longer just one family’s struggle. It has become a beacon of hope for countless others, proof that one mother’s determination can turn personal pain into lasting global change. 2026 is the year that change accelerates.