New UK charity founded after groundbreaking surgery for rare eye disease by expert doctor in capital of Costa del Sol

A British resident of San Pedro Alcántara has launched a new charity operating in the UK, with a particular focus in Malaga, following the birth of her son, who was born with a rare eyelid condition called blepharofimosis. Vanessa Rodrigo Jakubowski's son, Emilio, was born in July 2023 with a condition that means the eyelids do not develop properly during pregnancy, which results in babies not being able to open their eyes fully. Faced with an overwhelming lack of resources, information and support, she managed, via YouTube videos, to find the sole expert surgeon in the world, Dr Ramón Medel, who is based in Malaga.

"Emilio was diagnosed with this rare disease when he was three months old and operated on at ten months old, opening up his eyes and his whole world. This condition can cause all sorts of problems if not treated. If a child's vision doesn't develop in the first two years, then it will never develop properly. Also, because babies have to look through a small gap, they develop a head tilt, because they have to tilt their head back to see. This causes many problems, like bullying, social anxiety, exclusion and low self-esteem, so there are many different factors," Jakubowski told SUR in English.

The caring mother had discovered an alternative treatment called 'sling surgery', but this is a "very traumatic experience" because it can take up to ten operations and leaves a lot of scarring. There is also a long waiting list for this treatment in the UK.

"The magic is that Dr Medel invented a new method called 'frontal flap', which involves just one operation and which reduces the trauma and the scarring," she said.

As the youngster's mother explained, this surgery "is not available publicly or on most insurances", so she fundraised 20,000 euros in six months through family, friends, social media and events in Marbella.

"Following his successful surgery, I decided to start Through Our Eyes, the world's first charity to support babies and their families with this condition. The problem is that my son has a 50 per cent chance of passing this on to his own children, because it is genetic. The idea is to raise awareness, offer support and information and raise funds for operations for other babies," she explained.

Through Our Eyes (www.throughoureyes.net) is the only charity dedicated to supporting individuals and families affected by three rare eyelid conditions: Blepharofimosis Ptosis Epicanthus Inversus Syndrome (BPES), Ptosis, and Marcus Gunn Jaw Winking Syndrome (MGJWS).

"I am British and understand the rules and regulations regarding charity in the UK, where it is far cheaper to register than in Spain. The main hospitals and surgeons for the operations we are funding are in the UK and Malaga, but our mission will reach families all over the world. The reason I decided to cover the three conditions is because they are all very closely related, and I didn't think it was fair to cover just the one my son has," she said.

Jakubowski is now in contact with other families from as far away as Galicia, and in Seville and Malaga, whose children are suffering with these rare eyelid conditions. She aims to help these families with support and information, and funds to pay for the particular treatment these children will need. She has already organised a series of autumn fundraising events, which will include a fashion show, a charity lunch and a gala night in order to finance these important treatments.

"My plan over the next year is to arrange regular awareness and fundraising events here in the province of Malaga, and also in the UK. This will offer families of children suffering with these conditions the chance to come together to find the support they need. Although it might seem overwhelming at first for parents, we are here to listen and support anyone whose children are suffering. You are not alone. Please contact our charity and we will help in every way that we can," Jakubowski concluded.