STURGE Weber UK is a voluntary charity that supports children and adults with a diagnosis of Sturge Weber Syndrome and their families.
Four dads who each have a child with a diagnosis of Sturge Weber Syndrome, took part in the Welsh 3000s Challenge in October. Their aim was to raise money, much-needed awareness of the syndrome and promote men’s mental health.
We are proud to announce our SWS Dads completed the challenge in 20 hours and 27 minutes. A tough decision was made to retire Rick and Richard at the end of the second leg due to injury and time restraints to the whole team. So far to date they have raised £11,903.
As you may already be aware, The Welsh 3000s Challenge is one of the toughest mountain challenges in the UK with goal being to summit all 15 3000ft peaks within 24 hours, without using transport.
During the challenge they ascended over 4200 meters across 3 Welsh mountain ranges spanning 42 kilometers. They were very fortunate as the weather was very kind to them during the challenge. The dads did several training days on the mountains as part of preparing for this challenge.
On reflection of the challenge, the dads’ thoughts were:
“The next time I see a mountain top I will be in an airplane flying over it.” Rick B
“Whilst I am proud of my achievement this conversation is not finished. I will revisit this and I know I will have a very different conversation.” #mensmentalhealth Richard S
“The Welsh 3000 Challenge was not just about the goal, of getting the challenge done in 24 hours, it was about the journey. Not just 4 Dad’s, but the whole Sturge Weber Family showing Strength, Awareness and Support.”
#don’t_let_the_mountain_win. Nathan P
“I felt euphoric after the challenge and proud of all of us as dads for undertaking this challenge. It was a fantastic experience setting off over the mountains with this group of dads and am glad I was part of the team.” Nathan C.
So, what is Sturge Weber Syndrome? It is a rare, neurological disorder present at birth and characterized by a port-wine stain birthmark on the forehead and upper eyelid. Lots of people have facial birthmarks however, Sturge Weber Syndrome is also accompanied by abnormal blood vessels on the brain’s surface and the loss of tissue (atrophy) with deposits of calcium (calcification) in the cerebral cortex of the brain normally on the same side as the birthmark. Although can be present on both sides (bilateral). Then to confuse you more individuals can also present with no visible facial port wine stain birthmark.
The condition is caused by a change (called a ‘mutation’) in a gene, called GNAQ. This mutation develops in a growing baby before they’re born – it’s not something that’s passed from parents and not detected during pregnancy. Roughly 1 in 20,000 – 50,000 babies are born with the syndrome. The rarity of the condition highlights an immense need to raise awareness and support those living with the condition.
The most common issues associated with Sturge Weber Syndrome alongside a port wine stain are glaucoma, epilepsy, developmental delays (this might include learning to walk or talk, movement skills, learning new things and interacting with others socially and emotionally) and autism.
The aim of the challenge was to also raise much-needed awareness of the syndrome and as part of that, we have been grateful to have had lots of support from donations and sponsorship of items from various companies to help kit out the dads for the walk, so a very big thank you to all.
The monies raised will go towards supporting the charity’s annual family weekend and the ‘Make a Difference Grant’ which means we can offer more support to families. Grants that have been given so far are for an epilepsy watch to a young person to promote his independence, a battery-assisted wheelchair not available through mobility services for another young person. Hydrotherapy sessions, seizure alarms etc. to name a few more. We also support research into the syndrome.
Please support us in raising awareness by sharing, donating and/or visiting our website or social media platforms to find out more about this syndrome.
Please follow the link to the JustGiving page.
For more information, please visit: https://www.sturgeweber.org.uk/dads-welsh-3000-challenge/.