Monthly Archives: April 2012

Madison

Today I’m going all Wikipedia and begging for money.

I’m not keen on discussing my non-musical life here, but there’s something important that I would like to share with my lovely MMNB readers. I have a two year old niece, her name is Madison.

Last year Madison was diagnosed with Angelman Syndrome. If you’re like me, you just asked “What the hell is that?”( You can read about Angelman Syndrome on Wikipedia by clicking here: http://en.wikipedia.org/wiki/Angelman_syndrome) Angelman syndrome (AS) is a neuro-genetic disorder that occurs in one in 15,000 live births. AS is often misdiagnosed as cerebral palsy or autism. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome will require life-long care. There is no cure for Angelman Syndrome.

After having genetic testing done on the advice of a neurologist, my family learned that Madison was missing half of a single chromosome. Because of this, her development was extremely delayed (she was unable sit, crawl, hold her bottle, or chew food), she had upwards of 15 seizures an hour, and she exhibited a few of the classic AS characteristics.

Madison was put on medication to reduce the seizures and she started to receive both physical and developmental therapy.

Now she is able to eat:

Watch awesome movies:

I love Drive, Madison does not. She is a Sesame Street kid.

Sit/crawl, stand up:

Needless to say, I love this little girl more than anything in the world. Madison is my heart.

On May 19th I’m participating in a national walk for the Angelman Syndrome Foundation http://www.angelman.org/ and I’m asking for donations. If you’d be so kind as to donate, you can do so by visiting the fundraising page I started in Madison’s honor:

http://secure.angelman.org/index.cfm?fuseaction=donorDrive.team&eventID=521&teamID=5591

Click on my name VIOLETTE FIERRO and make a donation.

I appreciate the time you took to read this, I hope you open your heart ( and wallet) and make a donation.

Thank you to everyone who has already donated. You guys and gals are the best!

-Violette

Music From Real Life 2

This is what I listen to while I sort my laundry.

Animal Kingdom is also the name of a great movie.

I Really Like This Song But The Video Sucks Balls

Every single time I hear “Bigger Than Us” by White Lies I think to myself “I need to post this fucken song.” I just got around to watching the video and it’s crap.

If you doubt me, click here: http://youtu.be/JW0yynlDmqQ

Music From Real Life

 

This is what I listen to while cleaning.

 

Side note: I’ve been cleaning since 9 am. I would’ve been done sooner, but I let my place turn into something that resembled a crack den on The Wire.

The Middle East

I’m thankful you’re not an asshole.

→The Middle East – The Darkest Side

Silver Swans

This came out of nowhere and it is good.

 

My apologies for the lack of content. Been busy. Lazy too.