Hi I am new to this site, but thought I would share my situation.
Both my Son & Daughter have Alpha 1 Antrypsin Deficiency, both are on oxygon 24/7 they are 37 & 39, my daughter lives with me a she can no longer care for herself and also I care for my granddaughter as well. my daughter has been waiting for a Double lung transplant for the past 3 years, and as this disease as devesiting as it is, is not well known, even most Dr's have no knowledge of it, or even hospitals, although this disease has been around since the early 70's. It can affect peoples lungs, kidneys, liver's and eyes.
It has affected my son & daughters lungs, there now is medication to control the disease, but only in eary stages such as my grandson and granddaughter who have both been diagnosed with the disease.
I have lost my job, and as I am 57 am finding it difficult to find work, we will soon be evicted and my daughter will go into Assisted Living, my granddauther will go into Foster Care, and my self well (that is not the issue here) once my daughter goes into Assisted Living, she will have no chance of living, as they will simply assist while waiting for her to die. She will no longer have any chance of getting nNew Lungs, and will not even have her daughter at the end.
It is ironic if she had some well known diseae there would be some help, but as it is not there is absolutely no help, I have tried private and public fundng, the government, all the organizations I can think of to try to keep my dauther alive. I have simply run out of options