I'm keeping ACTIVE in APRIL to help raise awareness of the rare neurological condition Sturge Weber Syndrome and vital funds for Sturge Weber UK

So today we start our 30 mile Active in April challenge for Sturge Weber Syndrome which may not seem a lot of miles to cover in a month but with this condition we have good months and bad months and just to give you all an idea of what Sturge Weber Syndrome has thrown at us over the last couple of months below I have given you all a little insight of what T can go through

1 x Trip to A&E, 1 x Trip to A&E Eye department, 3 x phone appointments with Great Ormond street hospital, 2 x Neurology appointments, 2 x orthotics appointment, 3 x physio appointments, Appointment made for MRI scan to check for any changes to the brain after seizures and vision loss, Appointment made to attend Great Ormond street hospital, Medication increases and a new unlicensed medication added, Several trips to the pharmacy , Several phone calls and emails to update school, all along with the regular eye tests, dentist and orthodontist appointments which are never straightforward when you have to update any recent changes.
I think you will agree that committing to 30 miles is probably quite enough, and raising awareness of this condition is also important to us as Sturge Weber Syndrome affects around 1 – 50,000 and T is a little more rare having type 3 (no visible port wine stain)