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Spring 2019

Winter 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Cyd Frazier, Founder of the North Texas Albinism Community

Abstract: A parent of a child with albinism tells why and how she began an albinism group in North Texas.

Keywords:  visually impaired, albinism, low vision

 

On November 21, 2005, I gave birth to a beautiful baby boy named Grayson Guy Frazier.  He was born with Oculocutaneous Albinism Type 1 (OCA1)—big words that basically mean he is lacking pigment in his skin, hair, and eyes.  He has an acute sensitivity to light as well as low vision.  We see a pediatric ophthalmologist, genetics doctor, dermatologist, and vision therapist on a regular basis.  Already my baby has had a four-muscle eye surgery and will be undergoing another eye surgery in the next coming months.  Albinism is genetically recessive, thus making it rare—1 in 17,000 people have some form of the condition.  And Hollywood seems to portray every individual with albinism in a sinister and evil light.

After a few years of trying to cope and reach out for help, my husband and I joined a national organization called NOAH—the National Organization for Albinism and Hypopigmentation.  In October 2008, I called the NOAH headquarters and asked them if they had a local chapter in Texas that my family could join.  I was told that none existed, which instantly prompted me to ask, “Well, how can I change that?”

I realized that when there is a need in a community, action speaks louder than words.  I went straight to work to organize an albinism community in North Texas.  I contacted the local Lion’s Club who generously agreed to donate their facility for our meeting at no cost and NOAH sent out my invitations to members in the area through the mail and e-mail.  I also asked my son’s doctors, caseworkers, and therapists to help spread the word.  A few weeks, phone calls, and e-mails later, I had effectively put together an initial meeting for a local albinism community.  As a mother of a young son with OCA1, I realized how much I needed local support.   I quickly found out that I was not alone.

The response from my invitation surpassed my expectations.  Everyone that contacted me was excited about the prospect of a local albinism community, and attended the initial meeting on November 2, 2008 with high hopes.  Everyone wanted to pitch in and make this dream a reality.  It seems that all my efforts paid off in spades.

Reaching out to others with albinism and meeting other parents whose children share my son’s condition has made all the difference in the world for me and my family.  We have a support group now.  We have people to talk to that understand how we feel and the challenges we face.  We now have a community on which to lean.

I want to invite others to join us.  We are planning a Bowl-a-Thon in February and a mini conference in the summer of 2009.  You can contact us through our Yahoo Group at: <http://groups.yahoo.com/group/dfwalbinism>.  You can also e-mail me directly at <>.  We hope to hear from you soon!