James

 

James came into this world when I was 37 weeks . He was 18 inches and weighed 7lbs. During my pregnancy from very first doctors appt.- it was rough. While I was pregnant at the first doctors appt. they though his intestines were growing on the outside of his body. Turns out everything was fine. Then they noticed that his arms and legs were a lot shorter for how far along I was .. they mentioned possibility of dwarfism... they mentioned about me getting a amniocentesis test done, but I was to early and there were high chances of me losing James, so I instantly said no.  Weeks go by and me, my husband and my whole entire family were confused and upset not knowing what was going on.. A couple weeks go by and I get told by the doctor that they noticed with James heart that there were a couple holes in his heart so I had to go to a cardiologist . The cardiologist told me there was a high chance of James needing open heart surgery as soon as he was born. As soon as I heard the news from the cardiologist I finally agreed to get the amniocentesis done ..
A couple days go by and I get a phone call explaining to me the test results and being told that he is diagnosed with PKS.
When James was born they checked his heart a HE HAD NO HOLES IN HIS HEART I was so surprised he DID NOT NEED OPEN HEART SURGERY. 

James now just turned 1 years old. He has a trach complete with pasy mure, a g-tube, and is on just the smallest amount of oxygen. He also has glasses and hearing aids. He can kick and roll side to side all of his doctors and therapists are very surprised with everything he has accomplished considering his circumstances. 

PKS Kids provides hope and help to families.  Whether it's sharing information and support or providing grant dollars for equipment and therapies, we want to help.

Email: gretchen.peters@pkskids.net

Phone: 269-967-7175

Tax ID: 20-5653-043

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