Lots of Questions, Lots of Answers

I can’t believe Hannah’s video has been online for less than 48 hours, and it has already been viewed almost 1000 times.  That is phenomenal!  Thank you so much to those of you who have forwarded and shared our story. 

I have been overwhelmed with emails and facebook messages during the past two days, and I want to apologize for not being able to get them all personally answered…yet.  I’m working on it.  So please don’t feel that if you sent an email that I’m ignoring you, I just haven’t had a chance yet (especially since Little Girl A was home today from school, and I make it a point not to do Hannah stuff while the older kids are home).

I’ve received a lot of questions in these emails, and I thought I would answer some of them here (since more than one person asked some of these questions).

1.  When will you know if it is type 2 or type 3?  If we are lucky, we should get the DNA analysis back in mid-March, which will give us the gene sequence that can be compared to the Gaucher Registry to see if another person had this DNA mutation and what their prognosis/outcome was.  Unfortunately, Hannah may have a mutation that hasn’t been seen before (which wouldn’t surprise us being that her presentation is so unusual).  If that is the case, then we can do another skin biopsy and try an experimental procedure where they determine if a certain type of abnormality is present (type 2 has the abnormality, type 3 does not).  If that doesn’t work, we may never know…

2.  I can’t afford to donate money, but I want to help.  What can I do?   Money isn’t the only thing we need.  Just sharing Hannah’s story and video with your family, friends, coworkers, etc., is a huge help.  Networking is HUGE in an effort like this, as we don’t have the budget to “advertise” or have a “celebrity” to front us.  Hey, if you know a celebrity that is willing to do a quick PSA-type of video with us, please let me know!  But spreading our story is so important — the person you connect us with may be the key to helping us save Hannah’s life!  Also, if you have the time and really want to get involved, we could use the help in looking for media contacts and other outlets to get Hannah’s story out there.

3.  “Amazing mom,” “strong mom,” etc.  Thank you for the support on that.  But the truth is, if this was your child, you would probably do exactly what I am doing. 

4.  What keeps you motivated to do this for 7 months?  I don’t want my daughter to die.  I also don’t want my two older children to have to watch her slowly deteriorate and die.   We don’t have a choice but to do this.

5.  Are you going to sell the bracelets for donations?  Yes we are.  Just working the details out!  We are also working on fundraising with restaurant cards and magazines online. 

6.  Donations to cover our expenses.  Yes, I can’t work now, and yes, we do have an increase in medical expenses.  But for now, we are really focused on getting “the mouse.”

7.  Suggestion to get company “sponsorships” for Hannah (donations in leiu of advertising space).  Thanks for the suggestion.  I’ll look into this!

8.  Why we took off Google ads.   Because it only brought in a couple of dollars a week.  A few sites felt uncomfortable sharing Hannah’s website since we had “advertising,” so we felt it was MUCH more beneficial for us to have someone share our story than raise a couple dollars a week.

9.  Why doesn’t the Cerezyme work on the brain?  Cerezyme only works on the physical symptoms (bone crises, enlarged spleen, enlarged liver, low platelets, etc.).  It can’t pass through the blood-brain barrier, which is why it has no effect on the neurological symptoms.

10.  When is the Hope for Hannah walk?  Don’t have a date yet!   A few wonderful moms are coming over next Thursday night to brainstorm.  Once we have a date set, I’ll let everyone know!

11.  Expanding Hannah’s website to make it easier to keep up with different things.  Yes, I know.  I have so many things I want to share, report, etc., and I need a better way than what I have now.  I’m playing with the wordpress Magazine themes, and I’m getting stuck.  So if anyone can help me with this, please, please!

12.  Besides money and awareness, what specifically do I need right now? 

• WordPress Guru to help set up a magazine style format  Thank you Brian Gardner, StudioPress,  for your most appreciated theme donation!
• Graphic designer to create just a few buttons , header, and a couple of other little things for me.  I stink at graphics!!

13.  Are you taking care of yourself?  Honestly, not very well.  I admit it.  But I’m slowly getting into a new routine and part of that will include my wellness too.  Have to take care of my family, you know how it is!