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Mike Wilde avatar
Mike Wilde

Paul's Walk for William and Glut1UK

Walking the Camino de Santiago (860km) for Glut1UK for Matthew's Friends because they help support people with my grandsons sydrome

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£1,001.49
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MFGLUT1 UK

To raise funds for Glut1 UK projects

Charity Registration No. 1108016

Story

My dad Paul along with Albert (his brother-in-law), are going to walk the Camino de Santiago. They are doing this to raise funds for charities that are supporting family members that are suffering serious illnesses.

At 69yrs old they will be taking on the ancient 860km pilgrimage across the Pyrenees and Northern Spain and then another 100km to the coast (no doubt for a well-deserved cool cerveza!). They are aiming to do this carrying all that they need and over a 6 week period.

Paul explains below why he is undertaking this very challenging walk.

My Grandson William is eight years old and has a rare metabolic syndrome called Glut-1 Deficiency. It is characterized by developmental delay; speech and language delay, a movement disorder, epilepsy, learning difficulties and unusual eye movements. William has all the features of the syndrome. As the syndrome is relatively unknown, they didn't get a diagnosis until William was three years old, despite lots of tests and investigations.

Glut1 Deficiency is a treatable condition. Currently the only treatment is the Ketogenic Diet, which is a medical treatment for this syndrome and other severe epilepsy syndromes. There is no known cure for Glut1 as yet.

I am fundraising to support Glut1 UK which is a fledgling charity that raises funds to help raise awareness, fund much needed research and provide support to families with Glut1Deficiency.

Matthews Friends are very supportive of Glut1 families in the UK and have been fundamental in setting up the Glut1 UK charity.

We would love to raise as much money as we can to support this charity and raise awareness of this syndrome.

Thanks for taking the time to visit my JustGiving page.

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