Parent With 2 Adult Children And 2 Grandchildren With Alpha 1

I am a parent and caregiver to my daughter who is 37 and she has End Stage Emphysema COPD and Alpha 1 Antitrypsin Deficiency, she is on 24hr oxygen, cannot walk more than a few steps, cannot even breathe to eat, she has to live with me along with my granddaughter as she can no longer live alone, My son of 39 also has the disease, he is at about the same stage as my daughter, we have just found out that both my granddaughter 13 yrs and grandson 10 yrs have the disease also, (but at leat theirs can be controlled with medications now) he disease has been around since the early 70's but thry finding Dr's and hospitals that are aware of it! Not Easy.

I am a single parent who now is out of work (having been laid off after 5 yrs) and as I am now 57 it is very difficult to find a job! which means we are but a month away from being evicted from our rental home, if that happens, my daughter's only choice is to go into Assisted Living, where they will just make her comfortable and basically wait for her to die!!. My granddaughter will then go into Foster Care. We have been trying to get her on the Lung Transplant List for nearly 3 yrs now, she needs a Double Transplant, and we are still waiting, and now it looks like she will simply die within the year. I have tried every resource I could possibly find, there is no funding and no help for this disease, at least in Canada.

I truly am out of options, This is the kind of society we live in, where funding is available to help other countries but not our own!!!
limeylady limeylady
May 16, 2012