Politics of trying to be an advocate parent
February 11, 2009 by Carrie
Filed under Fundraising, Vents and Frustrations
I’m getting very frustrated…
As all of you that follow our journey regularly know, I am extremely gung-ho on trying to work to find a treatment for Hannah. I’ll be damned if I don’t do everything in my power to try and save her life! Admittedly, I can be a bit TOO gung-ho at times and may come up with ridiculous ideas sometimes, but I know in my heart I am doing it for the right reasons.
I don’t know the politics of the reasoning behind it, but the National Gaucher’s Foundation focuses their resarch primarily on type 1 and not on Gaucher’s Disease type 2 or type 3. Perhaps it has to do with the fact that 95% of the people that have Gaucher’s Disease are type 1. I really don’t know, and I haven’t really approached them as to why (although I do have a line of communication open with one of the directors who has been extremely supportive and is willing to talk to me next week about it). So, my beef really isn’t with them.
There is the wonderful organization called the Children’s Gaucher’s Research Fund. It was started over 10 years ago by a family who lost their son to Gaucher’s Disease, and they focus solely on type 2 and type 3. I was referred to them by the National Gaucher Foundation. This father has done amazing work, and I am in awe of what he accomplished in his son’s memory. But, I have been trying to figure out if they are still a very active organization or if they aren’t really that active anymore.
I’m so ready to start fundraising and creating awareness, but I can’t ask for money from people for research until I know that research is still being done, and if so, what specifically are we shooting for? I have HUGE ideas in my head, many of you already know that. I just hate the fact that I can’t get started. It’s been over a week or so since I heard from the guy who runs it, and I am sure he is extremely busy, but I need to get started on this. I feel like I’m already wasting time that could be used to try and save Hannah and the other kids with type 2 or type 3. And if they are no longer very active, then I want to know so I can start my own foundation so that we can get money to researchers who have already been working on finding treatments for type 2 or type 3.
I hate sitting around not being able to do anything. I know a few of you have asked about a fundraising button on the side, and as soon as I can find out exactly what is being done, then I’ll feel more comfortable asking for donations for research (as for our personal financial situation, that is taking a far back seat to getting money to researchers)!
I hope to hear back from somebody soon, as I’d rather focus on fundraising and awareness for an existing, already active group who has scientists and researchers in place. I’m ready to kick some Gaucher’s Disease you-know-what! I feel like yelling “I’m here! I’m ready to raise money and create awareness! Use me! Abuse me! Let me help!!”
Offers of Help
January 8, 2009 by Carrie
Filed under Fundraising
I didn’t want to add this to my previous post because it is too important and needs to be separated…
I have been inundated with so many fantastic offers of help. If I knew what to ask for at this time, I would definitely take you up on it! A few people suggested putting a donations button on our website to help offset medical expenses, but until I know exactly what we will need in terms of therapies, insurance coverage, etc., I don’t feel comfortable doing that. Perhaps in the near future. But thank you so much for caring about us so much that you would offer! I did add the Google ads on the sidebar, so if you find something that interests you, please click on that — it helps!
I have so many ideas to expand my blog. I’m going to ask my web-savvy and blog-savvy friends for help in developing it into a 4-fold purpose:
- To follow Hannah’s journey as we WILL find a cure for gaucher’s type 3 and give Hannah a long and healthy life like she deserves.
- To highlight other children with very rare medical conditions because I’ve realized that unless you have a “common” childhood disease, your situation will not get the exposure it deserves because there just aren’t enough people to give it awareness.
- To become an information house for parents of other Gaucher’s type 3 kids.
- To become a starting point for parents who just find out their child has a rare life-limiting or life-threatening condition on how to get help and services, especially since it can be lonely trying to find support when your child has something so rare that hardly anyone has heard of it.
So, if any of my websavvy and blogsavvy friends and visitors want to help with this part of my mission for this blog, please email me at the “Contact Link” above!
Working on a game plan
December 30, 2008 by Carrie
Filed under Fundraising, Rare Disease
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.
Trying to find what I need
November 25, 2008 by Carrie
Filed under Fundraising, Gaucher's - Research, Rare Disease
My pity party from yesterday morning is over. I guess I need a good cry and lashing out every once in awhile, because I’m back to feeling motivated and ready to kick ass against whatever is going on with Hannah.
There are so many things I need right now to deal with this, and it is hard finding what I need…mostly answers. But here they are…
1. Alternatives to NPC and Gaucher’s. Even though two are the ones we are waiting testing on, what if these come back negative? I’ve tried twice to get alternative possibilities from our genetics doctor, and he has yet to give me anything. I realize that if I know what the alternatives could be, then I could focus less and stop dwelling as much on NPC, you know? What else could it be?
2. If Gaucher’s is unlikely, why is it still on the table? I understand from the Gaucher’s specialist that I emailed that her 50% to 55% enzyme level activity is too high for it to be Gaucher’s disease, but could Hannah be a fluke? Or is just testing it to rule it out along with the NPC test a “just to do it” thing and I shouldn’t get my hopes up (isn’t it sad that I would prefer gaucher’s disease over NPC?)
3. Finding a support group. Damn, it is so hard trying to find a support group around here for parents (and even siblings) of chronically or terminally ill children, doesn’t have to be disease specific. Even online. I’ve met some WONDERFUL parents of kids with NPC recently, and they have been a godsend. Truly have. Just being able to talk about it, hear their stories, just be able to reach out to someone who understands. I’ve sent emails to the Ronald McDonald house out here, and I’m going to call TCH downtown next week to see if they have anything.
4. Coming up with a fighting game plan. Once we get the diagnosis for Hannah, and if it turns out to be NPC, Gaucher’s, or something else life-threatening, I want to start fighting right out of the gate, as you already know. But coming up with a solid plan is so difficult. I have so many ideas, but where do I start?
This is just the beginning…there are so many more, but I just looked at the clock and realized I have to jump in the shower for Big Boy E’s Thanksgiving party at school. See, that is another thing. What do I say when people ask “how is the baby?” Most people here don’t know what is going on with her. How do I respond?
But life is still going…off to put my son, my second grader, in the spotlight now. It is hard when I am so consumed with Hannah lately, but Daddy and I are going to really start making a conscious effort to focus more attention on the other kids as well. (Yep, we had a big talk about that last night).
