In other ways her life is very different from other children. Sophia is a surviving twin and one of the smallest babies in the world to survive, weighing only 10 ounces (290 grams) at birth. Sophia spent seven months in the Neonatal Intensive Care Unit and came home with oxygen, a feeding tube, and numerous medical conditions. She has spent a lot of her life in hospitals and doctor's offices. Sophia is legally blind and has several other eye conditions.
Sophia is a child with a severe visual impairment. Every doctor, therapist, and expert agree on this fact. Federal and state disability law secure certain educational rights for Sophia. However, she has lived her entire life without the public schools in Texas rightfully acknowledging her disability and providing her educational services. No cane training, no magnification devices, no braille, no Teacher for the Visually Impaired, no technology, no independent living skills training, no orientation and mobility training, etc.
What does Sophia's visual impairment mean for her? Sophia has to have something 4-6 inches from her face to see it. This means that reading print material and being able to read for a prolonged period is impossible without assistive technology. Sophia cannot see the chalkboard, even if she is sitting 5 feet away. She does not have facial recognition if she is more than 5 feet from someone. This means that you may be her mom or her best friend, she can't see you well enough to tell exactly who you are. And even then, she has a difficult time recognizing and interpreting facial expressions. This impacts social situations dramatically. Sophia does not have depth perception. That means that she can't see changes in terrain or elevation, like curbs or stairs, carpet changing to wood flooring, or a door mat. She has very limited peripheral vision. Her severe visual impairment limits her ability to navigate her environment independently, perform daily living skills (dressing herself, brushing her teeth, food preparation, etc.), and develop study and organizational skills.
Our family had to sue two school districts for them to even acknowledge that Sophia has a disability. Before legal proceedings, the school district had determined something no doctor's diagnosis would support. The school district said Sophia did not have a disability and did not qualify for special education services. To make matters worse, it has been uncovered that the Texas Education Agency secretly capped special education services in Texas and as a result many thousands of children have been denied the special education services vital to their development and education. Sophia is one of these children.
In December 2016, the Houston Chronicle included Sophia in one of the stories it did on the 8.5% cap the Texas Education Agency secretly put on children with disabilities receiving special education services in Texas. You can read the story here:
In October 2016, the Federal government began investigating the systematic denial of special education services to children with disabilities in Texas. The Texas Education Agency (TEA) finally stated it would end the special education cap. In May 2017, the Texas Legislature acknowledged that an illegal cap had been put on special education in Texas and passed a bill that ordered TEA to never again cap the number of children enrolled in special education programs. Ending the cap is only the first step to ending the injustice.
Sophia's case is now beginning it's journey in Federal Appeals court.
It is our family's goal to seek justice for Sophia, but also to change the system for all children with disabilities in the state of Texas.
School district's have large legal budgets that allow them to outspend and outstay most families. Many families that would like to seek legal recourse cannot because of the extreme expense and complexity of the process. All of this is in addition to the challenges of caring for a special needs child. Our family has paid for all of Sophia's educational expenses, therapies, vision aids, and legal expenses until now. Plus, we have paid decades of property taxes to school districts that deny our daughter special education services. The costs are staggering.
We would like to continue our efforts to change the educational system for children with disabilities in Texas through both the court system and through advocacy.
Donations made to Sophia's Special Education Legal Fund will be used exclusively to pay for legal expenses for the Federal Appeal. If funds are remaining, we will use them solely for advocacy work and to support organizations that are advocating in Texas for visually impaired students and students with disabilities.
We are grateful for your financial support, your prayers, ideas, stories, and encouragement.
Without your financial support, we cannot continue this fight.
- Nadia Tajalli
- Doug Janota
- Beverly Morgan
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