Support Enzo's fight with Sturge Weber Syndrome

Hi, This is Randy, father of Enzo, a 7 week old baby who was diagnosed recently of a very rare neurological disorder known as Sturge Weber Syndrome. We thought he was just having a birthmark called Port Wine Stain but it turned out to be a lifelong condition which will cause him seizures, stroke like episodes, mental and developmental delays, muscle weakness and paralysis, making him also at high risk for glaucoma anytime now or later and worst vision loss. Early treatments and intervention are the key to help him live a normal life. We are located in the UK but waiting list for all the assessments, interventions and treatments are ranging from a minimum 12 weeks to 52 weeks timeframe and even more. My wife has been in contact with the GP and other people to have Enzo's case escalated and hoping they can offer urgent medical attention yet she was told we just really have to wait. On the other hand, we consulted a specialist in the US who is expert regarding SWS for medical advice and we were told to come and see her in New York or Italy for further evaluation. We were educated that early preventive measures are the best way to help our son in this battle. Gold standard treatment like laser therapy should be started as early as possible and seizures must be prevented instead of waiting for it to happen. We wanted to help our son the best way we can like any other parent would do. However, we need assistance in funding Enzo's treatment with the private sector as we cannot risk the quality of life we want him to experience in the future by just waiting and doing nothing.

We humbly ask for your help in this difficult time. Our hearts are full with all your prayers and that alone is more than enough but any donation will be extremely appreciated to help us fund our son's medical expenses. Thank you and may God bless us all.