Tuesday, March 23, 2010

Disney MakeAWish update

We're having a blast here at Disney on Emily's Make-A-Wish trip!! Everyone is so nice and accomodating. It's hard to believe this happens every day for so many families like ours. What a blessing. Check out our slideshow above to see what's going on...

Yesterday we played at Magic Kingdom ALL DAY and Emily did great. :) We closed things out with the amazing Disney fireworks. Wow!

Today we spent some time at Animal Kingdom and that is quite a place. The highlight was probably the Lion King show. Emily could see the whole thing from where they sat us and characters were coming to say hi to her throughout the show. She loved it and we loved watching her enjoy it. :)

In case your new to our blog, Emily has Spinal Muscular Atrophy (SMA). This Make-A-Wish trip is a dream come true. :)

Emily may be coming down with something so please keep her and us in your prayers while we are here.
- Posted from my iPhone

Thursday, March 18, 2010

Operation Disney

Soooooo - we are embarking on our epic Make-A-Wish journey to Disney this coming Sat!!! We're heading out in an RV and will arrive sometime on Sunday. How exciting!

This is also extra special because we have family AND friends joining us on this once-in-a-lifetime trip for Emily. My parents, my oldest sister and her husband and 5 kids!, and some very good friends/Emily's nurse with their baby girl will all be participating in this high-speed Florida expedition (complete with smartphone Disney Apps, pinpoint GeoLocation, and live tweeting/blogging as @natedlee, of course!)

We'll be in FL for a week enjoying all the fun the Disney parks have to offer. Give Kids the World is the extremely accommodating place we'll be staying while we're, which caters specifically to disabled families visiting the area..... all I needed to know is that they have free Breyers ice cream 24/7. :)

Anyway, we are so excited to have a crowd with us to celebrate Emily's life through this super-fun trip. Thanks for joining us: Mom/Dad, Kevin/Wendy, Steve/Krissy, and company. You're the best!

Wednesday, March 03, 2010

Help :: Jump Rope for Heart

Hi, my name is Annabelle and I’m in 2nd grade at Bellows Spring Elementary School. I’m raising money for the American Heart Association through Jump Rope For Heart. Jump Rope For Heart raises money to help kids with special hearts. The money I raise will help pay for new medicines and treatments to be discovered. It could help cure heart disease – for everybody!

Will you please help me be a Heart Hero? When you give money you can help kids with special hearts! Will you please help me save lives and make a donation? Please visit My Headquarters Page to donate!

Thank you! :)

Tuesday, March 02, 2010

News, Make-A-Wish, and a Court Hearing #SMA

Wow! We are so happy with how the WBAL news segment turned out!! Please take 5 minutes to check it out (or click here for the YouTube broadcast) if you haven't already. Basically, we've been battling our insurance carrier over skilled nursing coverage in our home and I turned to WBAL to see if they'd be interested in doing an investigation, and you can see the result. Yeah, the situation sucks, but this is good press for Spinal Muscular Atrophy (SMA) and everyone needs to know how disabled families can easily be bullied by these MULTI-BILLION DOLLAR insurance giants.

We've received our final approval for Emily's Make-A-Wish trip!! Yep. We'll be heading to the sunny south to take in the sites of DISNEY!! WooHoo!! And, yes, we'll be sure to... oh... I dunno - maybe blog and tweet while we're there. ;)

The other thing I haven't been talking about is this: we are going to court against CareFirst insurance over the denial of skilled nursing. We have navigated the formal and proper appeal and grievance process with both CareFirst and the Maryland Insurance Administration, as you can read in this previous post, which has lead to my requesting a court hearing with the Insurance Commissioner.

So, on 20 Apr 2010, the burden is on our family to show that CareFirst has done something unlawful by determining Emily has no qualifying medical needs for nursing and consequently canceling her nursing coverage. We'll be working on things until then.

I've been asked why we'd continue to fight this even though Emily's nursing is now covered under Maryland Medicaid. Well, if we can set some precedent for other families that are faced with this same crappy, unethical situation hopefully they'll find some comfort knowing there are other families fighting the same battle - and that they SHOULD NOT TO GIVE UP!

Let us know if that's you and maybe we can find a way to help you fight too. :)

Monday, March 01, 2010

We're on the news tonight!! #SMA

Don't miss Emily on WBAL tonight!! The I-Team is doing a special on Emily, Spinal Muscular Atrophy (SMA), and our struggles with CareFirst insurance and the Maryland Insurance Administration.

I'll post the video after they put it up. In the meantime, watch the primer.

Gene Therapy Research for #SMA!!!

E take a minute to read how gene therapy is reversing the effects of Spinal Muscular Atrophy (SMA) in mice models. We are SO close to curing SMA!!! Praying for a cure.....
COLUMBUS, Ohio – Reversing a protein deficiency through gene therapy can correct motor function, restore nerve signals and improve survival in mice that serve as a model for the lethal childhood disorderspinal muscular atrophy, new research shows.

Within 13 days after the injection, 90 percent of the treated mice had the muscle coordination needed to right themselves as quickly as normal animals. By this time, untreated SMA mice already were suffering symptoms that left them unable to right themselves. The day-1 treated mice also were nearly identical to normal mice in their ability to run on a wheel.