Wednesday, May 2, 2012

We Heart Harlie Fundraiser

I have some exciting news to share!  Oh, but I don't even know where to start...

First of all, I'm feeling MUCH better now.  I had to go on a second med (Prednisone) to kick the lung thing I have/had.  It took a few days, but I am now able to "work" each day without wanting to pass out.  Yay!  My employers have a terrible sick day policy - I get NONE.  And because I was feeling so incredibly crappy - I could not blog about this exciting event coming up.

Harlie's Girl Scout troop (#5091) and leader (Lynda) is organizing a cardio/strength training fundraiser (We Heart Harlie) for Harlie.  The main goal is to raise money for her third jaw reconstruction scheduled for August 24th at Boston Children's Hospital.

The event will be held at Glen Allen Elementary School on May 19th, 8:30-10:30am.

There will be some adult fitness classes (including Adrenaline, which is super exciting since that is my favorite class EVER) and there will be a fitness class for kids ages 5 and up.  Lynda is also a group fitness instructor at the Shady Grove Y, so she will be teaching a class, too.  Be prepared though, she'll kick your butt!  But if you don't want to workout - you can just come to have fun and show your support.  There is no charge for the classes - but you can purchase raffle tickets for chances to win some awesome prizes.

They are working on that now (the raffle).  So, if you - or someone  you know - has a service or product that you/they would like to donate to the cause, that would be AWESOME and we would be so, so grateful.  Just let me know or contact Lynda directly at  We've already gotten some great products/services that I am so excited about!  More about that in a post to come.  I will provide a link to the businesses in a future post just in case anyone is interested.

I don't particularly care to talk about the financial side of raising a child who is medically fragile.  So, I don't.  However, I feel somewhat compelled to sort of explain some things since some pretty fantastic people are about to donate their hard-earned money for our daughter.  So, here's the gist...

We will be traveling to Boston, Massachusetts in August for surgery.  We will also go in July for a bunch of pre-op stuff.  After she is discharged after surgery, she will return for many more post-op appointments, and that's if things go well.  Jet Blue flies direct from Richmond to Boston, and is usually not super expensive.

Staying with a child who is hospitalized is not cheap.  Every meal, drink, parking expense, cab ride, etc. comes out of pocket.  From what I understand, there is not a Ronald McDonald House available for us to stay in (the one there is only for cancer patients) but there might be another place similar, and we'll work on all that in the months to come.

Insurance-wise, we will be going "out of network" which will cost us thousands more out of pocket.  Harlie also has Virginia Medicaid, which usually takes care of whatever insurance will not cover.  However, Boston Children's Hospital does not accept Virginia Medicaid.  I am still working on our options and am hopeful we can come to some sort of agreement (or that I can convince them to enroll in Virginia Medicaid for us), so we don't have to go in blindly without any idea of the debt we are about to incur.

One thing I want understood is that we are going forward regardless.  And we are willing to accept whatever costs/debt, etc. will come our way to get Harlie the best care and chances at having the best life possible.  It's as simple as that.

Having a fundraiser for your daughter feels awkward to say the least.  I feel like that just needs to be said.  I would give anything to have a child who did not require 28 surgeries in her first 5 and a half years.  That is not the kind of life I wanted for my child (heck, for any child!).  But, she is worth it!  And we are so grateful to be surrounded by wonderful people who love us, love her and want to help in any way they can.  We are so blessed in so many ways.  And during the bad days and rough patches we experience, I remember that and it keeps me sane.  And from drinking myself into oblivion.  ;-)

The flyer with all the information on the fundraiser is in the works and will hopefully be finalized and ready for distribution in the next day or two.  Lynda also created a Facebook page called We Heart Harlie and an Event called We Heart Harlie.  So, if you're on FB, check them out.

I'll post the flyer on here, as well, for those of you not on Facebook.

A lot of thank you's will be forthcoming, of course.  So, you might get sick of reading how thankful I am.  Sorry about that!  But, I can't help it!  I AM so thankful!

Thank you and much love,
Christy xoxo


Tanya said...

As to talk to a social worker at CHB. She will be able to help some with meals etc.

So long as Harlie is in ICU (hopefully not long!), one parent can stay bedside and (since you are from out of town) you will likely have access to dorm-like accommodations right at the hospital. Contact the Center for Families for more info on this and other lodging options. There is a hotel right next to the hospital (The Inn at Longwood).

Please feel free to contact me with questions.

I really feel for you on the money front. It SUCKS when the kid gets old enough to have an inkling of the cost of her medical care, starts to grasp the impact on the family (even when constantly reassured that she need NOT worry about it), starts to worry about how she will ever pay for all her medical expenses as an adult :-( (

Tanya said...

Oh.... to clarify in case it is NOT the norm everywhere... one parent can ALWAYS stay bedside. I've stayed with M the entire time, every time.

Christy said...

Thanks for the info. It seems I have a lot of phone calls to make! I will definitely be messaging you in the coming months...

Oh, what a burden for our kids to have to think about the money... that is awful. As if they don't have enough to think about. They are worth it. I hope M knows that, too!