MPS AWARENESS DAY

Rare Beauty: Faces of MPS - 2018

Today, on International MPS Day (15 May 2018), those living with a rare, genetic disorder, known collectively as mucopolysaccharidoses (MPS), have told their stories as part of a new photo series, which aims to raise awareness for this group of condition.

 

 

Chelsy, 10, living with MPS IVA

Chelsy loves to sing and act, and also
loves an audience!  #MPSRareBeauty #MPSDay18

Chelsy Jones and her Family

For Chelsy and her family, raising awareness for
MPS means that more people can understand what
it's like to live with a rare disease like MPS #MPSRareBeauty #MPSDay18

The girls of the Ward family

“We didn't know we had this gene until we had Daria.
There will be children born in the future who have MPS, no matter what we do. It's important to remember that MPS may be the diagnosis, but it's not who they are.
They are the same child the day before diagnosis as they are today.”

Trina, Daria's mum  #MPSRareBeauty #MPSDay18

Daria, 18, living with MPS I

Meet Daria, who happens to be the biggest Taylor Swift fan ever

Kaitie, 13, living with MPS I H

If Kaitie could be anything in the world, it would be a unicorn!

#MPSRareBeauty #MPSDay18

Kaitie and her mother Kimberlee

“I wish people would understand that she’s not a regular child. She’s amazing. She has challenges that other people don’t have, and while I want her to have as normal a life as possible, and to be treated as
normally as possible, she’ll always be different and that’s ok!

– Kaitie’s mum, Kimberlee. #MPSRareBeauty #MPSDay18

Alec, 11, living with MPS IIIC

Alec is one in 1.5 million. He has MPSIIIC. He also wakes up every morning with joy and a cheeky smile on his face.

#MPSRareBeauty #MPSDay18

The Morrice family

"There are those with disabilities that don't present as typically
disabled and so are misunderstood.  All I want for him is to be surrounded by
understanding and love and to never feel different from his peers."
says Alec's Mum, Michelle.

#MPSRareBeauty #MPSDay18

Want to know something more about Jack? He's always hungry, a little cheeky, super resilient and extremely loving

#MPSRareBeauty #MPSDay18

Jack

Samantha and her mother Deidree

"When I was diagnosed, Google didn't exist. My family and I
went to the library into the card catalogues and found one book
that had one vague reference to MPS and that's all we could find," says Samantha Prior, who was diagnosed with MPS in 1991.

#MPSRareBeauty #MPSDay18

Samantha, 32, living with MPS VI

“Not only are you the benchmark for everyone coming behind you,
you also have no one to look to for the future,” - Samantha, one of the eldest Australians living with MPS

#MPSRareBeauty #MPSDay18

 

William, 9, MPS II

William Travers is nine years old and loves to play basketball  

Travers Family

"You can't find a cure for something if you've never
heard of it. That's why awareness is so important.”
- Kara, William's mum

#MPSRareBeauty #MPSDay18

Jesse-Rose, 9, living with ML III

Jesse-Rose loves to dance. She started practising at
home in front of Youtube videos and now goes to
dance class every week.

#MPSRareBeauty #MPSDay18

Damian, 12, living ML III

Through all his pain, Damian still knows how to have fun!
"We wheel him up the playground, and then he jumps up out of his wheelchair and runs away," says Richard, Damian's dad.

#MPSRareBeauty #MPSDay18

The van Damm Family

"We just want them to study, fall in love and travel" - Juanita, Jesse-Rose and Damian's mum

#MPSRareBeauty #MPSDay18

Isabelle, 9, living with MPS I

Isabelle is a bubbly eight year old who loves to dance and laugh.

#MPSRareBeauty #MPSDay18

The Schodde Family

For Isabelle and her family, raising awareness for MPS means
one day finding a cure. “If not for us, for others,” says Isabelle's Mum, Bobbi

#MPSRareBeauty #MPSDay18