Our daughter Josephine was diagnosed with MPS 1 Hurler Syndrome on her first birthday. After a stem cell transplant at 18 months, she has been doing relatively well. However, she recently became self-conscious about looking and moving differently. She stared to say: “Mum, nobody is like me.” and “I`m the only one who is as short as me.”
Attending the MPS Family Conference in Calgary this summer was invaluable. Josephine met other kids with MPS for the first time. Her siblings connected with siblings of other MPS kids too so they could see that they aren`t alone in this. The knowledge shared was enlightening, and the inspirational stories from other families – struggles and successes – gave us much to reflect on.
The kids had a wonderful time, and the atmosphere was fun and friendly. We felt well cared for. We took home many Impressions and an understanding that we are indeed part of a group of people who face quite unique struggles. Only if one lives with MPS can one understand the Impact it has on everything you do and think. It was nice for once, to be in a room full of people who could relate and understand.