Dear Friends and Family,
As many of you already know our youngest daughter Vanessa has Albinism. By definition Albinism is the lack of pigment in skin, hair, and eyes. The lack of pigment cells in the eyes causes visual impairment(low vision) and Nystagmus. Nystagmus is involuntary movement of the eyes. After receiving the diagnosis we were directed to the Delta Gamma Center for visual impairment as a resource for Vanessa. The Delta Gamma Center has been a blessing and instrumental in Vanessas' development. Vanessa works with several therapist from DGC on a regular basis and with their tireless efforts she has achieved many things we were uncertain she would be able to after her initial diagnosis.
The Delta Gamma Center is a non-for-profit organization that holds several fundraising events each year, one of which is the annual Run for Sight. Our family and many friends have participated in the Run for Sight the last three years and are doing so again this year. We would like to invite anyone who would be interested to join us to either run, or walk with us. If you cannot attend it is also possible to donate to the cause through Vanessas' team.
Update: Vanessa had (Strabismus) eye surgery on February 11th 2013 and is doing well adjusting post surgery. The surgery tightened some muscles and loosened others in an attempt to correct what is called the null point. A null point for people with Nystagmus is the direction the eyes point when they can best control the involuntary movement of the eyes and focus on the object at hand. Along with the eyes not pointing straight ahead it may also be necessary for the effected individual to tilt their head or turn their head to focus which can lead to head and neck problems. Vanessa is still adjusting to the surgery, it could take up to four months for the brain to adjust fully. However, after the four month recovery period she will be tested again to see if more surgery will be needed. We are hopeful she will not need more surgery.
The 2013 Run for Sight will be held Sunday, May 5th, 2013 @ St. Louis, Union Station. Race Day registration and Packet Pickup 7-8 am. Race Start 8:30am