Meet Anissah!...a fun, bubbly, energetic 9 year old who loves art, singing, running, and basketball. She is smart, and funny, and full of personality! What you may not know, is that Anissah was born with the condition Albinism.
Albinism refers to a group of inherited conditions affecting a person's pigment in their eyes, skin, and hair. People born with Albinism always have problems with vision that are not correctable with glasses. Many, like Anissah, have low vision and are considered legally blind. Anissah also has astigmatism and nystagmus. Nystagmus is what causes her eyes to move back and forth, like a pendulum. She cannot control it, and it gets worse when she is tired or stressed. She often gets teased because of this. She tries to explain it the best she can; her Albinism and her Nystagmus. However, she feels alone and like she's the only one with these conditions. The last year or two in school have been the hardest.
She is learning more about her condition and how to explain it to others. She, herself, has only met one other child with Albinism.
We are learning how to advocate for services and to educate others on the condition-what it really means to have Albinism (the daily visual difficulties).
We'd like to encourage everyone who is reading to visit the NOAH (National Organization for Albinism and Hypopigmentation) website to learn more - www.albinism.org.
So, we are now asking for YOUR HELP! WE CAN'T DO THIS ALONE!
We are determined to get to the NOAH conference held in July 2014 in San Diego! We'd like our family of three to go together, but the cost is overwhelming. We are asking for donations to help pay for the 3 plane tickets, hotel, conference registration fees, and other associated costs. The conference is held July 10-13, 2014.
Help us provide this one-of-a-kind experience to Anissah at a time she needs it most-to see that she is not the only one, to share her experiences with kids just like her, and to learn tools to help her succeed. There are also workshops for parents and siblings so that we can understand the world through her eyes, and learn ways to help guide her.
THANK YOU in advance for your donations, positive thoughts, and prayers!
Marguerite, Anissah's Mom
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