Don’t! Just dance. Or scream your lungs out. Given To Live is pretty damn sure Reece will be filling the room with his dance of delight as he goes to his first ever show. Pearl Jam in Oakland.
Reece has a condition that we’ll say more about shortly but there’s always more to all of us than just our diagnosis, our story, our scars. Sometimes it can take years of the gentlest healing to discover we are more than our wounds. Sometimes we’re thirteen with a very rare condition and yet we still find within our kindness, our love, our joy.
We’ve already discovered this about Reece. When we asked him what his most wanted songs to hear were the one he most wanted was Indifference. Because it’s also his mum’s favourite. And mum, Kelly, has her own challenges as she faces constant pain due to fibromyalgia, lupus, graves and small fibre neuropathy.
Reece also wants to hear Dance Of The Clairvoyant open the show. Then another conversation with dad Matt and Reece in the background gets around to what’s your very favourite Pearl Jam song and like so many when asked that about their favourite band it ends up being a ridiculously unfair question and Reece is stumped for an answer...there’s simply too many songs he loves!
Reece has a very rare condition, GLUT1 deficiency syndrome, (and to learn more we’ll add links at the end) which went undiagnosed for years because during test after test after test the doctors weren’t looking for it as it’s so rare. Fits were a huge part of his life as was a wheelchair until finally the correct diagnosis was found. Now life is different, a wheelchair a precautionary companion rather than a necessity, fitting mostly in the rearview mirror and a quality of life no one in the family could have imagined.
Oh it’s still not easy, not by a long shot. For example each meal he eats has to be to the exact gram and is accompanied by an injection of exact amounts of fat relative to what he’s eaten which is an integral part of a ketogenic diet. And he’s also a regular kid, a teenager who loves baseball and music, sings in a choir and on April the 19th he’ll be going to see his first rock n roll show, Pearl Jam. And amongst all the songs he’d love to hear he’s also just a tiny bit excited for a Mike McCready solo. Or two. Or three...in fact just as many as possible. Now we’re not able to say that he’ll get all the songs he’d love to hear but McCready solos...we’re confident you’ve got those, Reece. Tickets to the show and a hotel nearby are taken care of and we may have one or two other things up our sleeves.
Yes, it’s Reece’s show but we’re also going to take care of Kelly and since all meals are on us, Chef Matt can take a day off and simply eat and critique.