Marfan Syndrome (❤️ & lung disease)

I'm 25 now I was diagnosed with a disease when I was 2 years old called Marfan Syndrome after my dad had passed away of the disease at 32. It's a bone connective tissue disorder. It effects my heart, lung, and also my eye sight. In 2013 i got pregnant and my lung had collapsed when I was three months pregnant, the doctors could not do anything to me with out risking me loosing my daughter. All they could do was stick tubes in my chest to re-inflate my lung. This year February 2016 I started having breathing breathing problems again. I went to the hospital right away. My right lung which was the same one that collapsed when I was pregnant
was slowly collapsing again and the air pocket that was on my lung was the size of a tennis ball and it was only getting larger. The doctors immediately put tubes in my chest to re-inflate my lung until my surgery room was ready, they had to go about it different because with my heart disease my aorta valve is detaching from my heart slowly and I have two leaking valves to my heart also . The doctors put me under and went through my mouth with tubes and a microscope cut and erupted the air pocket until busted it, cleaned all around the little air pockets beside the big one and put this stuff to seal the holes so they won't reopen again. This will not be my second and final rodeo. More then likely there is a 90% that the air pockets can come back on either lung because of my Marfan syndrome. There's also a high rate that I could possibly pass away from this disease as I get older. I usually don't ask for help but I'm at my lowest and could really use it. I need to pay for the surgeries, medications when I am out, upcoming doctors appointments and My medical bills are outrageous because I don't have Medicaid. They took me off it because I'm not pregnant and because I'm not fully disabled. Which my finical advisor in the hospital is in the process of working on me getting SSI because I'm not suppose to work because of the condition that my lungs and heart are in but that could take 9-12 months before I even hear anything back. I'm embarrassed to even ask for help but I really need it for my health and to keep me living  for my 2 year old daughter. If anyone can help me with reaching my goal even if it's not much I would be forever grateful.
Thank you 
Stacey Wright

https://en.m.wikipedia.org/wiki/Marfan_syndrome


Tubes going through my ribcage into the top of my lung, out through the bottom and back out through my skin.