Diagnosis: MPS IV A

Country: Austria

What makes this individual special, unique and a role model for others

Maria was diagnosed when she was 3 ½ years old, now she is almost 17. We had a rather wonderful time so long. Although Maria has already had some surgeries like neck fusion at the age of 4 and a complete correction of legs, which was very painful, at the age of 8, she never stopped smiling. Maria is our second of five children, so she has a big family loving her and caring for her.

Regarding to other pupils Maria had good and bad years in school – the older she got, the more she was only accepted, but not fully integrated. Being different is not easy. Nevertheless she has some real friends which mean a lot for her. Learning was never a problem, she is in a business school now and we hope that her acute problems in the spine will not make her to capitulate. Whatever happens, we don´t force school, the most important thing is being happy.

Proudest accomplishment

Maria fully accepted having MPS, even getting worse time by time. It’s hard to believe, but she is very happy to have hearing aids and one of the greatest moments last year was receiving her electric wheelchair, which of course gave her a lot of independence.

At the age of 6 Maria told us, that she knew why she is suffering from MPS: “God wants to know, whether I love him, though I´m very sick – and yes, I love him.”

And the best thing is, she still loves him, has great confidence in God and strongly believes that she wouldn´t fall deeper than is His arms.

She is our sunshine and we´re so proud to have her!

Words of wisdom about living with MPS

Don´t judge our children by their size! They are much bigger than they look…

The message Maria would have to other individuals with MPS is: “Never stop laughing, never stop fighting, even a life with MPS can be wonderful. And at the end there will be God, who loves you amazingly. He is waiting for you and by the time he will give you a wonderful body.”

Ayşe Nihan Uğuz