I am delighted to say that we, as TeamMAX have just completed the Epilepsy Action Grand Canyon Trek in memory of my 22 month old son Max. Max tragically died in June last year due to Sudden Unexpected Death in Epilepsy. Max had the SCN1A Dravet Gene Mutation and was expected to outgrow his Epilepsy. Max's seizures were grand mal and manifested themselves when his immune system was compromised by a basic virus, bad cold or temperature, teething etc. Fortunately Max lived life literally to the Max, a typical toddler, into everything and just like any other child. You would never have known he had any health condition whatsoever - a child with a particularly happy and content disposition. We had numerous hospital stays, fortunately usually fairly short and Max's quality of life when well, was excellent. Max went to nursery, tumble tots, swimming, Peppa Pig World, the beach and all other usual pursuits.
Our Trek to the Grand Canyon was truly awesome - we trekked around 10 miles a day through challenging terrain, following Indian trails in the Havasupai Falls area. We followed beautiful pale blue waters, jumping through emerald green waterfalls and generally tested our physical strength - ending in a memorial evening for Max.
On our journey to this trek, we have spent the past 10 months fundraising. Our events have ranged from Quiz evenings, Easter Egg Hunts to Family Fun Days and a Charity Golf Day - to date we have raised just shy of 30,000 GBP. Our goal is to fund a research grant relating to Max's specific illness and SUDEP.
If you are interested in what we are doing to raise awareness for Epilepsy, please see www.teammax.co.uk
Gail, Max's Mummy
Max Miller Prior 4.8.09 - 21.6.11
'What the caterpiller believes is the end, to the butterfly is just the beginning'