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.”
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