Our beautiful family friends “The Hutton-Storer’s”

Hi My Name is Jess.

I’m looking to try and get as much help as possible (big or small) to ease a little bit of burden.. ie (medical, specialist appointments, petrol, accommodation, most importantly #time with their babies)

for this absolutely beautiful and very deserving Family of 5, who would give anybody the shirts off their own backs an have never asked for anything.

its also taken a while before it was ok for me to open this GoFundMe for them!!

This comes as Laura and Tristan’s youngest Daughter “Macy” has been diagnosed with a devastating extremely rare, incurable and untreatable condition called #Zellweggerspectrumsyndrome which will eventually Rob this beautiful family of their Ray of Sunshine that is their little girl and sister.

This condition affects only 1 in a million!

Now as I have tried to write the best description above as I could from the words of a broken hearted Mother, the next will be from Laura’s Facebook post I have copied and pasted.

Laura’s Own Words

Had the boss on the job today!

She had a horrendous night with fevers, coughs & discomfort. Also had a trip to Dumblyung for OT scheduled so it was a day tagging along with mum. She was determined to “help”

We have had a devastating diagnosis for Miss Macy. An incurable, untreatable condition which will eventually rob us of the ray of sunshine that is our little girl.

How do you process the thought that your little girl, who has been through so much, still has mountains to climb, roads to travel & unbearable hurdles to overcome?!

Life is so bloody unfair. We believe Macy in the only person in WA to have this genetic condition. A rare disorder that will destroy her little body one organ at a time. She has been through so much. Has endured more than is fair to any person. And yet, she still laughs. Still cuddles. Still endures. Still fights on.

Our beautiful girl. We will forever vow to give you the best life. The most beautiful experiences. The most wonderful memories. We will love you more than the stars in the sky, the waves in the ocean & the sand in the desert. We will walk beside you. We will hold your hand. We will dry your tears. We will love you. Now, forever & until our last breath. We will do whatever we have to give you the most wonderful time on earth.

The road ahead is scary. Terrifying in fact. But you have the whole world behind you, because you are ours & we, with the love & support of those who love you, will cradle you when you fall. We will give you strength when yours run out. And we will never, ever stop fighting for you.

You are one in a million & we promise we will never ever give up on you.

#suchisthelifeofafarmerswife #potd #wevegotyou #raredisorders #oneinamillion #macymoo #ourlittlemiracle #zellweggerspectrumsyndrome #wevegotyou #wewillnevergiveup #youreworthit #lifeissofuckingunfair #youvebeenthroughsomuch #thejourneyisjustbeginning