My husband and I got married in 2008 and I discovered I was pregnant a year later. Our little girl arrived after a smooth pregnancy and we called her Miya. Her birth had been a little bit rocky and she arrived face first, so at the time, I wasn’t alarmed at the slightly “squished” look to her face, particularly her nose.
When Miya was 2 weeks old, she began showing signs that worried us. She wouldn’t stop crying and she suffered terribly from “silent reflux”. Her breathing was noisy and I felt something wasn’t right about the way she looked. Her face, particularly her eyes, forehead, and nose, struck me as being slightly… off.
Her head was quite large and her neck was quite short. Her blue eyes were beginning to turn a cloudy grey colour. She was very floppy and her joints seemed to crack excessively. I took her to our GP about her noisy breathing and he advised she was young and her respiratory system was immature and just to keep an eye on it.
Miya has problems with her feet, and our orthopaedic doctor felt that perhaps this was a symptom of something greater and referred us to a paediatrician for testing. This doctor was the only medical professional who had the courage to say they thought something unusual was going on with Miya’s health.
Miya was diagnosed with MPS I Hurler Disease in 2011.
My husband and I are trying to stay strong. Now we know what Hurler Disease is, we understand that we will need courage for the future. Chris is a serving soldier in the British Army, and they have been tremendously helpful in making sure that we are posted in the South West of England so we can be close to Miya’s hospital. My family are all in Canada, and Chris’ family are in Cumbria, so we are a little “island” of sorts.
I know this is not a long story; we’ve only been dealing with MPS for a short while, but it has changed our lives. The MPS Society has been very helpful in sending us supportive information and offering to put us in touch with other families who are affected by MPS. I know that in the difficult times to come, the MPS Society will be there for us as parents, and for Miya, offering us the support we will all need.
However, if our story can help someone else or bring awareness to MPS in some way, we are glad to share it.
