For The New Year…..

…we’ve officially moved everything over to our new hosted domain, http://www.armandshope.com/.  Everything should look about the same, although our subscribers may have to resubscribe.   In the coming future I’ll be updating the look of the site as well, making some changes I couldn’t do on this site.  Thank you for following and please share our site and our story with your friends.

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2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 9,400 times in 2013. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

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Story From The Local News Today on Armand

Today we held a small party for a boy, Dylan, and Armand’s best friend at school, Maddie. We wanted to show thanks and recognition to these two kids who have been a friend to Armand despite his condition. Local News Channel 7 was there, and showed it on the 6 o’clock news.

Two years ago, Dylan found out about Armand and his disease, and asked his family not to get him birthday presents, but to make a donation to Armand instead.  This winter, he posted a picture to his instagram account (dyl_insani), and made a donation for every “Like” he got on a picture of Armand, asking for people to “plz help my friend”.  Dylan is 11 years old.

Maddie and Armand

Maddie and Armand

Maddie is in Armand’s class at school this year, and has taken a shine to the wee man.  She’s made him pictures, she interacts with him (even though Armand can’t talk back), got him a blanket and Spiderman doll for Christmas, and decorated some frames to hold pictures of Armand.

We also wanted to recognize Armand’s cousin Gavin, who lives in Michigan.  Gavin ran in a 5K to raise money, netting over $150 for Armand.

I know I talk a lot about our friends and family and strangers who have helped us (myself and Lindy), but we also need to recognize kids who think about others and donate their time, money, and friendship to a little boy who can’t give much back at the moment.

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Lookit Him Laughing!

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We’re Moving!

Coming soon we will be moving over to armandshope.com.   This blog will forward over so you won’t have to adjust your bookmarks.  Thanks for following my dude.

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Gabriella Miller Kids First Act (H.R. 2019)

https://cosponsor.gov/details/hr2019-113

To eliminate taxpayer financing of presidential campaigns and party conventions and reprogram savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health, and for other purposes.

Please share this link, and sign your name as a co-sponsor.

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I Just Have To Say…

I can’t say enough good things about how awesome Armand is doing.  He went nearly a month without a single major seizure (until around October 15th or so), and since then he’s only had a handful.  And that’s with being sick for several weeks with bronchitis and other assorted fevers and issues.  He’s been a ball of smiles and laughter with everyone around him, having a blast at school and at home.  He still has some sleepless nights, but he seems to be much more individually interactive, he’s making new sounds, being more active.

We had tossed around the idea of starting him on a higher dose of miglustat, but we haven’t done that yet.  We have, however, started him on a nightly dose of CBD, a substance that puts the “medical” in “medical marijuana”.  It’s not THC, it’s not weed, but it is derived from hemp (however, it is legal).  Lindy has been all over this from the get go as soon as she heard about the positive effects it can have on the CNN special that aired a couple months back.

For those reading nationally and internationally, please help me raise money for Cincinnati Children’s Medical Center by clicking this link by Saturday, November 2nd and make a donation.

For those reading locally, the same day, November 2nd, is the 5K Walk for Armand’s Hope in Lewisburg, OH.  Entry is only $20, proceeds go directly to help Armand.  We will also have for sale (or for order) the Medallions For Miracles that are helping us fund the new Elise Cook Foundation for Rare Disease Research.  You can get the form at http://www.tcncommunityassociation.com/5k-walk.

Oh, and Armand is going as Superman this year.  Or SuperMand.

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