New to the Group, Hi!

[Guest guest]

Our son, Calvin, is two and has bilateral PMG. Our family (four kids) were

living overseas when Calvin was born; after a few months of struggling to care

for him we moved back to Michigan in the US.

Calvin is cortical vision impairment, low tone, high spasticity, and

tracheobronchomalacia. I think the hardest part about caring for him is the soft

airway. He sometimes chokes on his own saliva and when he cries his airway

collapses and he becomes blue and then hypoxic if we don't intervene.

It has been two years of tremendous grief and transition which I'm sure many of

you know about. Up until this point I haven't connected with other parents of

PMG, I thought I was the only one out there with this disorder, especially since

there is no known cause.

We love our boy dearly but it is very difficult to see him suffer and he spirals

down quickly with any respiratory issues. He loves his brother and two sisters,

swinging, music, cuddles, and the sound of running water.

I blog regularly at www.karadedert.com

I'm looking forward to being involved in this group.

Take Care,

Kara