Michael James was born full term weighing 4 lbs 3 oz. My pregnancy was perfectly normal just like MJ s older sister who is a healthy 5 year old.
At birth MJs size shocked us all and he spent his first few weeks in special care where lots of tests were done to see why he was so small yet perfect. He fed fine even though minuscule amounts and still won't take more than 3 - 4 oz at any time. He did suffer from reflux for more than a year and still has very little appetite.
MJ has had appointments nearly every week of his life and has seen everyone from heart specialists, endocrinologist, dietician, physiotherapist, neurologist and has yearly MRI scans to check for brain abnormalities.
When MJ was 3 months old it was clear there was a bigger issue and our peadiatrician spoke to the centre for genetics in Dublin. This was when russell silver syndrome was mentioned and when our journey with primordial dwarfism started.
After various meetings at the centre in Dublin and the blood tests that were analysed in Germany, we got our diagnosis of mopd II pericentrine + in March 2010. MJ is the first child that the centre have diagnosed with MOPD II and they have little knowledge on the condition or what the future holds for us.
MJ needs speech therapy as he is yet to talk but has no problem letting us know what he wants. We were set back recently as he stopped walking and found both his hips are in the wrong position since birth. Soon MJ will have a major operation to correct this.
In August 2010, we headed to Liverpool to attend the walking with giants convention. Here we met other families and children like us and it was like meeting long lost family. We even met another family with primordial dwarfism from Ireland and have become good friends. The hope, encouragement and friendship we found there is priceless and at last we are not alone. We could share stories, gain knowledge and enjoy our time together and it would prove to be the most valuable week of our journey so far.
Michael James is now 2 years 4 months old, weighs just 11 lbs and at 24 inches tall still wears 0-3 month clothes. He is a happy bubbly boy who loves playing with his sister and thrives on the attention he gets everywhere we go.
Everyday is a struggle when you live in a world you don't fit, but with determination like MJ has, it won't be for the want of trying!
Sonia and Patrick - Michael's Parents (Ireland)