Our beautiful little boy William, is six 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, we 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 two charities:

1) Matthew's Friends is a fantastic charity which supports families of children who are on the Ketogenic diet. They send out a box of practical essentials to each family when they start the diet and are always at the end of the phone for advice. Their website is fantastic. They helped us enormously and still do.

2) Glut1 foundation is a US Charity which raises funds to help raise awareness, fund much needed research and provide support to families all over the world with Glut1Deficiency. Matthews Friends are very supportive of Glut1 families and are in the process of helping to set up a UK 'branch' of the Glut1 Foundation.

We would love to raise as much money as we can to support these two amazing charities and raise awareness of this syndrome. 

To that end myself, Nick, Paul & Phil are going to cycle the well known 'Coast to Coast' route from Whitehaven to Tynemouth.. More details to follow.... 

 

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