This little cutie is Azaria Sage. She is four years old. Not long after her birth she began having seizures and her parents were told that she was missing a part of her brain. The doctor's say she might live to be 10 years old. But they don't know.
I got a link to AzariaSage.org from TJ, a person that I just met last week in an online in a chat group that I belong to. After reading about Azaria I felt compelled to share her story with you.
From the website:
We were told that our baby has Aicardi Syndrome. Aicardi Syndrome is an extremely rare genetic disorder (only 300-500 cases known worldwide). It is a genetic disorder but it is not hereditary. Each case is new and is considered a "spontaneous mutation". Aicardi Syndrome only affects girls and the three main identifiers are the absence of the corpus callosum, daily intractable seizures, and retinal lacunae (lesions) that are specific to the syndrome. Also, spinal abnormalities, developmental delays, microcephaly, and other brain abnormalities are some other affects of Aicardi Syndrome. The prognosis and life expectancy is grim, but varies with each case. Medical management of seizures and early intervention with various therapies is generally the treatment. As for Azaria's prognosis, we were told she may only live to be a year, ten years at the most. Doctors said she will never walk or talk, and may be blind. (She is considered legally blind).
It wasn't until after I started writing this post that I realized TJ is Azaria's dad. I usually can keep my composure when I hear about things like this. I turn into Florence Nightingale and go into "let's help" mode. But the connection being closer then just a URL left me in tears.
So what can be done for Azaria? Sadly there is no cure. However there are therapies and medications that have significantly decreased the seizures. Most of which are not covered by insurance. No surprise there. The family is fundraising to send Azaria to Dolphin Assisted Therapy this summer. You can read more about the therapy on Azaria's site. I noticed the deadline is June 18th and they are barely 1/3 of the way to reaching that goal.
I'm just really grateful that I have good health, a nice home, family & friends, work I enjoy, a nice computer and a speedy connection. I have all these things that I take for granted. Especially time. That, for Azaria, remains to be seen.
I look at this and I see a little girl who probably won't be with us very long. I see her parents doing everything they can do to make her comfortable. Good people. It makes me sad... and angry that this is the way that it is. I imagine TJ and his wife don't have the luxury of being angry or sad. I suppose it's all they can do to just accept and move through each day as it comes.
So if it's within your ability, could you please help get Azaria a dolphin. I don't know if the therapy will help her condition, but I'd really like for her to have the experience. Please help me to do that for her.
Also, if you have a website or blog and can spread the word that would be nice too.