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:
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:
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!