'Supermarkets Don't Sell Bones'

$94,074 raised

TARGET $100,000

Please support this cause

$
AUD

About

To have one child diagnosed with Morquio A is heartbreaking. For the Horders, with two children, the impact is immeasurable – emotionally, physically, medically, socially and financially.

Our beautiful friends Max, 13 years, and Mila, 12 years, have an extremely rare disease that is damaging their bones, affecting their growth and mobility. Their health has deteriorated in the past 18 months. They used to run across grass and skip down stairs but now they struggle to maintain their balance.

Their mum and dad and two brothers see the heartbreak of Max and Mila’s pain every day. They’ve just had the devastating news of being denied access to treatment. Morquio A, a lysosomal storage disorder, can only be treated by Vimizim, the third most expensive drug in the world. Last week, the Australian Government’s PBAC refused to list it on the PBS. In a cruel twist, Max and Mila were misdiagnosed seven years ago. This meant that they were not eligible for a Vimizim trial which had started previously.

We are asking for your help to improve Max and Mila’s quality of life. They need our support for their day-to-day needs – physiotherapy, aqua therapy, mobile scooters, operations and other medical equipment and bills. One of the decisions they’re facing is whether to travel to Germany to access treatment or even if further surgery can help. While Max and Mila are in hospital, their little brothers need childcare, and of course, hospital parking is enough to bankrupt anyone. There are so many things to consider. Honestly, we don't even know the extent of what they'll need yet but the costs are mounting every day.

This family has already been through so much – please help us to help these wonderful, amazing kids who deserve a better life. Thank you from the Horder family and all of their friends.

Max’s message: “I have a life sentence but I have done nothing wrong so why won't they give me Vimizim?"

Mila’s message: "I just want to a chance to grow tall enough to go on the big girls’ rides at Luna Park. One day, I want to get married and have children of my own.”

Their little brother: "Why can't we just go to the supermarket and buy them some new bones?"

The parents’ message: “Our life and our purpose has exploded into a million pieces as we continue to negotiate the barren, potholed journey some parents of children of rare diseases travel.”

Fundraising For

Max and Mila Horder

Max, 13, and his sister Mila, 12, have a rare hereditary condition called lysosomal storage disease which is damaging their bones, affecting their growth and mobility. Their little brother asked: "Why can't we just go to the supermarket and buy them new bones?"

Funds Banked To

Martin and Janelle J Fowle


Campaign Creator

Janelle Fowle

Frenchs Forest, NSW



Fri, 29 Jul 2016

Deborah Hitchen

$ 100

I watched these two gorgeous little kids on The Project and was so moved by their story but also by how kind and caring they both were. I wish Max and Mila and your family nothing but the best. I hope from the bottom of my heart they get access to the medicine and treatment they need. Much love. xox

Mon, 18 Jul 2016

Adam Bonser

$ 100
Tue, 5 Jul 2016

Anonymous

$ 500
Wed, 29 Jun 2016

Anonymous

$ 300
Thu, 23 Jun 2016

carmel barber

$ 30

Ask all your supporters to petition the Government for the medication you need. Bless you kids. Hope they find a cure for this so you can run again.

Mon, 6 Jun 2016

Nigel and Cathy Wratten

$ 10
Sun, 29 May 2016

Karen Nitch

$ 200

We hope this can help towards getting the medicine you need, to help stop you're bodies feeling the pain from this degenerative disease.

Sun, 29 May 2016

Anonymous

$ 500
Sun, 29 May 2016

Simon Millar

$ 200

Thinking of Max and Mila and their family. Also will be signing the petition at: https://www.change.org/p/sussan-ley-the-pbac-need-to-approve-the-life-optimizing-treatment-of-vimizim-for-max-and-mila

Thu, 26 May 2016

Ruth Kerwood

$ 100

Thinking of you all.... Max and Mila, may you run and walk again one day without pain xx

SINCE Apr 2016

1228 

Donations

$94,074 raised

TARGET $100,000

Please support this cause

$
AUD

Fundraising For

Max and Mila Horder

Max, 13, and his sister Mila, 12, have a rare hereditary condition called lysosomal storage disease which is damaging their bones, affecting their growth and mobility. Their little brother asked: "Why can't we just go to the supermarket and buy them new bones?"

Funds Banked To

Martin and Janelle J Fowle

Campaign Creator

Janelle Fowle

Frenchs Forest, NSW

SINCE Apr 2016

1228 

Donations