Our kids have two completely different rare genetic disorders..
Leland has runx 1 It's a disoeder that causes your platelets to be low & is associated with aml (leukemia). 1 out of 3 people develop aml. He suffers from low platelts & iron, a very weak immune system & bruses very easily.It also causes all kinds of abnormalities . Waylon has chondrodysplasia punctata, it's a type of dwarfism. It causes narrow airways,stippling of the bones, spinal abnormalities.. Waylon has c1 c2 sublixation ( c spine instability) .. When his head falls forward c1 slips on top of c2 and pinches his spinal cord. He stops breathing. ( that's why he's in the brace).He has the narrow airways, and several other medical conditions. Any support is greatly appreciated. We have to travel 5 hours away from home (Louisville/Kosair)  to their specialist ever two weeks or once a month sometimes more. Waylon aslo has physical therapy here at home once a week & in home therapies.  They both have had a rough road and longer to go, but as long as we have God and each other there is nothing that is impossible . All love and support is appreciated, God bless.