Working on a game plan

I have started working on getting a plan of action together so if we do get the diagnosis of NPC (or another confirmed diagnosis) that I can have a head start on being proactive. I have no idea what my mindset is going to be if we get a terminal diagnosis — each time I think about it I start to break down, and I know I have to hold it together.


So I have been studying up on our insurance benefits, researching NPC in more detail as well as other lysosomal storage diseases that are included in the testing they are doing with NPC, getting contact details for specialists (and finding out if our insurance covers them), looking into flight prices to the NPC specialist (if it is NPC), vaguely coming up with fundraising ideas for research and non-insurance covered treatments (like the $80,000/year Zavesca/miglustat experimental treatment), getting contact details for the National Institute of Health program (even though I already talked to the coordinator on the phone last month) and the National Niemann Pick foundation coordinator, articles on dealing with siblings of children with a terminal or chronic illness, etc.


I feel very lucky that I have some friends and family members who are willing to help out once we know what we are dealing with. When people ask me “Is there anything I can do?” these days, all I can say is “not now, but I’m sure I’ll be need help once we know.” Whether it be fundraising help, research help, volunteering time for projects, media help, etc., I know that I will take whatever is offered to me — whether it be as little as just telling their friends/family about Hannah’s situation (who knows, they may know someone who knows someone who could be very helpful) or really getting involved in a number of ideas I have. I know that every little bit will help.


If Hannah does have a terminal disease, I cannot sit back and not do anything, you know? I will do whatever it takes, ask for help from whomever has offered, and fight as hard as I can to make sure she gets every opportunity available to live a happy, cognitively intact, and painfree life.


I keep telling myself that there has to be a reason why God brought our little suprise, Hannah, to us after so many years of infertility treatments and adopting Big Boy E and Little Girl A to create our family. Maybe her purpose here is to help find a cure for a disease that currently doesn’t have one yet. I can’t believe God would be so cruel as to bring her to us after all this time (and three miscarriages) only to have her taken away from us.


And if my prayers are answered, all of this will have been unnecessary, as she will have a treatable condition and live a long and healthy life.