Diagnosis: MPS I

Country: Germany

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

Clara, MPS I Hurler, 8 years old, is a very strong character. She has outstanding motivation, always tries to meet (and meets) the requirements. So she is for example participating in sports in a regular school being well accepted although not being the fastest. She has an admirable endurance to keep on learning e.g. maths and reading after school to keep on with other pupils. Clara has an incredible memory of birthdays and time sequences and enjoys planning and thinking of future events like holidays and family celebrations.

Being at her limits in many cases, she remains to be an open and friendly family type character having friends and enjoying life.

Proudest accomplishment

There are two major accomplishments Clara is very proud of:

  1. to be the big sister and
  2. to go to school

When her 3 year younger sister was born at our home and Clara first saw her, her very first words were "now I am the big sister". Since this time she loves and fights with her little sister, overprotecting, commanding and cuddling her.

Since she is 6 years old she is visiting a regular primary school with supporting measures. She loves schools, her teachers although it is a real challenge for her being sight and hearing impaired.

Words of wisdom about living with MPS

  1. Make the best out of it, it is worth it. Most of the MPS kids are extremly happy and kind, giving back a lot of joy, pleasure and hope.
  2. Living with MPS makes you to focus on the important things of life.
  3. Join forces with other MPS families, e.g. within the MPS societies. It helps to find answers to (daily) problems, find friends understanding the special situation and allows to "find hope together"
Ayşe Nihan Uğuz