MEDICAL DESCRIPTION

Albinism occurs when one of several genetic defects makes the body unable to produce or distribute melanin, a natural substance that gives color to your hair, skin, and iris of the eye. There are 17 different types of albinism. Children with albinism have normal intelligence, and can expect to live long and healthy lives.

A child with albinism will have one of the following symptoms:

• Absence of coloring from the hair, skin, or iris of the eye
• Lighter than normal skin and hair
• Patchy, missing skin color

Many forms of albinism are associated with the following symptoms:

• Light sensitivity–photophobia
• Rapid eye movements–nystagmus
• Vision problems, even occasionally functional blindness
• Crossed eyes–strabismus

TREATMENT

• Albinism cannot be cured with medicine or surgery.
• Frequent eye exams are necessary as the child may have decreased vision.
• Wearing hats and sunglasses, even when indoors, can help make a child more comfortable and less sensitive to light. Wearing sunscreen is important anytime a child goes outside to prevent sunburn.
• Providing large, clear pictures/letters to children with albinism can help develop both vision and language skills. High contrast toys are best.

TESTIMONIAL

NEUHAUS FAMILY

We always wanted to adopt. We have a biological son and when the time came to talk about having another child, we both agreed we’d like to adopt. A friend gave us an announcement from her church bulletin about and AGCI informational meeting they were holding in our area. We went to the meeting and decided that night we wanted to adopt a little girl from China. We got our paperwork turned in and waited and waited and waited! We were on both lists – the healthy and the special needs list.

Just as we were beginning to get frustrated about the long wait, we got a referral! It was a little girl with albinism. We didn’t know much about that need, but AGCI gave us the name and number of another family who’d adopted a little girl with the same special need. We called and talked to them and felt that the special need wasn’t really that involved. The second we saw her at that government building in China, we were in love! She’s an amazing little girl! She has the funniest personality – very thoughtful, always talking and very artsy. We can’t imagine our family without her. AGCI was very helpful throughout the entire process. They were very organized and always helpful if we had questions. When we got home with our daughter, we had a great support system with family and friends, but it was great to have the support of AGCI as well. Our social worker was always just a phone call away, and no question was too silly for her. Everyone who we dealt with there was very caring and helpful, and that made the long process much more bearable. We were in good hands with AGCI throughout the entire process.