Living with MPS

The ups and downs of life are nowhere better reflected than in our MPS-families. No matter whether it’s a shattering diagnosis that all of a sudden throws life off track or one of these terrible moments in between where one is helpless towards the progressive disease nevertheless trying by all means to help, support and safe the child … or whether it’s death at the end, when time stands still and you start wondering, if you’ve done everything right.

MPS has many different faces

Living with MPS is often incredibly difficult. Is it always like this? No, but almost always. There are few children having a mild form of MPS, which allows them to grow up, maybe even start their own family, have a job and live a self-determined and independent life. That makes us really happy. We know a good handful of these patients in Austria. Yet life looks different in most MPS-families. Even where we encounter mild forms of MPS, where children are able to go to school and learn or maybe are in the position to receive an ERT, we still find a lot of helplessness within the affected families. Serious decisions have to be taken constantly – hospital, doctors and therapists, pain therapy, right time for surgeries, choice of the ideal school and / or profession, nursing staff … Well – and then there are those MPS-children who need to be cared for around the clock intensively because they have unlearned everything, even how to swallow.

A bit more time

There is no hope for many MPS-children. They will never become grown-ups and perhaps not even teenagers. It is a terrible certainty that we can accompany our children only for a short time. That’s why we want to enjoy the time remaining as intensive as possible and help our children to spend it as pleasant and painless as possible. We love them, we are proud of them. We don’t see in them what the disease has made of them but admire their inner beauty, their power and strength, their joy of life and will to live. They teach us so many things as for example being humble and concentrating on the essential things of life – and of course to fight: For them, for their quality of life, for a bit more time together.

You want to have more information about MPS? You need support and further information? Contact us!