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Faith- One Month Old

This website is dedicated to sharing the story of Super Baby Faith and her progress.  Born full term on September 10, 2009, in Austin, Texas, Faith has bilateral anophthalmia (no eyes) and is completely blind. In December 2009, Faith’s family received genetic testing results that explained the cause of Faith’s anophthalmia. Faith has a mutation in the SOX2 gene. SOX2 is crucial for development of the eyes as well many other things. The combination of the various manifestations that can result from this mutation is often referred to as SOX2 anophthalmia syndrome. Faith also has bilateral sensorineural hearing loss, feeding issues which resulted in the placement of a G-tube, global developmental delays, and a severe sleep disorder. Faith also has neurological issues resulting from brain abnormalities, as well as endocrine and gastrointestinal issues. Faith’s family takes one day at a time and continues to keep the faith as they deal with the daily challenges!

According to the International Children’s Anophthalmia/Microphthalmia Network, anophthalmia is a medical term that is used to describe the absence of the globe and ocular (eye) tissue from the orbit. The terms Anophthalmia and Microphthalmia (A/M) (small eyes) are often used interchangeably since CT scans or MRI show some remnants of either the globe or surrounding tissue in most cases.  Anophthalmia/Microphthalmia (A/M) may affect one eye with the other eye being normal, or both eyes, resulting in blindness.  A/M is rare, but the exact incidence is unknown. One report from a prospective study of 50,000 newborns found an incidence of microphthalmia of 0.22 per 1,000 live births. In a recent study in England, the prevalence of anophthalmia and microphthalmia was 1.0 per 10,000 births. SOX2 syndrome is estimated to affect 1 in 250,000 individuals. About 10 percent to 15 percent of people with anophthalmia in both eyes have SOX2 syndrome. For more information about this condition, visit www.anophthalmia.org.

Faith and her parents(Mike and Bridget)  moved from Kyle, TX back to their home state of Missouri(St. Louis area) a few months after Faith was born. Due to the ongoing needs of Faith, Mike and Bridget felt that it was very important to be close to family as both Mike and Bridget’s families are in the St. Louis area. Another motivator for making the move was a job offer for Mike after being laid off. This job will provide financial support and stability for the family. Bridget resigned from her teaching position in Texas and is taking an extended leave from her teaching career to keep up with all of Faith’s appointments and needs.

Mike and Bridget are so grateful to their great friends in TX who have been so loving and supportive. The Wildschuetz’s are settled in Missouri and are surrounded by supportive family and friends that are helping them with the everyday challenges.

The Wildschuetz family has grown! Faith is now a big sister! Her baby brother (Graeme) was born in March of 2012.