Sunday, June 29, 2008

A good visit

Sorry for the delay. Our visit to Senator Mikulski's office went well. We were there with representatives from the four major supporters of Spinal Muscular Atrophy (SMA) research for a cure: FightSMA, FSMA, MDA, and the SMA Coalition. The meeting went well and we shared our story. :)

Let's hope and pray that meeting like ours happen regularly, where needed, and legislation is passed to empower research to find a cure for SMA.

The SMA Treatment Acceleration Act will provide the next level of national coordination and therapies for persons dealing with this horrible disease. Experts are confident that we are very close to finding a cure for SMA, yet research is sorely underfunded from our government. Additionally, research for SMA will benefit other forms of Muscular Dystropy, ALS (Lou Gehrig's disease), and various other incurable diseases.

We're anxious to see this pass!
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Wednesday, June 25, 2008

Meeting w/ Senator Mikulski

Thur we will be meeting with Senator Barbara Mikulski (D) and her HELP commitee in DC to talk about our experience with Spinal Muscular Atrophy (SMA). The meeting has been arranged by FightSMA and is important in the fight for an SMA Act to be authored and passed.

Hopefully our story, along with others, will get this thing going so our government will start funding research for a cure for SMA, the #1 genetic killer of kids under the age of two.

Medical advances have been made possible through the funding of private organizations like FSMA, FightSMA, and others, but more funding is needed if we're going to beat SMA, which also happens to be one of the most, if not the most, cureable of the known neuromuscular diseases.

Please join us in praying that this Act will be established and urging your government to establish an SMA Act.

Peace <><
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Monday, June 23, 2008



You are as beautiful as ever and full of wisdom. You take care of all our special needs, and you do it with an incredible display of selflessness and cheer. Thank you so much for everything you do.

We love you lots and thank God for your every day -- Nathan, Annabelle, (Linnea), and Emily.

The picture is from our trip to Thailand in '01.

Thursday, June 19, 2008


Well we're hear. Pulled in during the Celtics celebratory parade - didn't even knew they played recently :x

Anyway, we're hear and starting to meet some other families coming in from various parts of the country. Should be a good time.
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So, this is how we roll. We rarely stop for the night, but here we are, just into Mass-Achoo-sets. You're only looking at a small portion of what we travel with :: 3 suitcases, fridge, wheelchair stroller w/ gobs of medical equipment filling up the powerstrip and every plug in the room, etc, etc. It's like we're moving! LoL. To Boston we go, in the morning. Peace <><
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Wednesday, June 18, 2008

On our way!!

We're on our way to Boston! :) check my Twitter updates on this page for more frequent posts while we're on the road.

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Wednesday, June 11, 2008

Yeah for pictures!

Well I've gotta some fun pictures for you all this time. :) A quick update, though. Emily's doing GREAT! Ever since we figured out the allergy stuff she's just been doing really well. Trying extra hard to talk and being very verbal otherwise.

By this time tomorrow we will have met with our county representatives to decide Emily's Individual Education Plan (IEP), which many disabled families dread. I think we're going to come out ok, however, with all the plans we'd like to see for Emily to start Preschool this Fall! Don't worry, we'll always be with her. :)

So, Annabelle's finishing up school, I'm finishing up school, Diana and Cindy are both going to be starting school this Summer/Fall -- busy busy busy. All in all things have been pretty good and we thank God every day for the time we have with Emily.

In fact, things have been going well enough that Diana and I are about to head out for a 24 hr getaway, while Emily is cared for by her nurses and her aunt Cindy. -- first time getting away overnight in nearly three years, no joke.

On to the pics!!!

Linda and Beth, from Cole's Quilts, made Emily this beautiful quilt and delivered it to us a couple of weeks ago. Thanks so much you two, and Cole's Quilts. Check out their site if you haven't yet!

Hangin with mommy in the kitchen, you know, eating celery and stuff. :)

Apparently she likes Pepper's. And bright yellow one's. YUMMY!

One of our favorite smiles in the whole wide world!

Peace <><