Clara-Meretan Kiah/Staff Writer
The University teamed up with the Mathew Forbes Romer Foundation to create a pilot nursing program where students provide in-home care to children with terminal genetic brain diseases.
Yarelis Alicea was the first to complete the University’s program.
The MFRF, a South Florida-based organization that raises awareness and funds for research on terminal genetic brain diseases, placed her in the home of a child with Tay-Sachs last year.
Tay-Sachs is a rare hereditary disease in which fats build up in a child’s brain, causing loss of bodily functions. It can lead to blindness, paralysis and death.
The Romer family, whose son died of Tay-Sachs in 1998, founded the MFRF because of a lack of nurses available with the correct training and compassion necessary to provide the extensive amount of care a child with a genetic brain disease needs.
Alicea provided in-home care to the child as a supplement to his mother’s care and what their insurance provided them.
Alicea spent a total of 30 hours with the family during her last semester at the University. The program counted as her clinical requirement, the in-the-field training portion of the community course at the end of the Bachelor of Science program.
Maria De Los Santos, a professor in the College of Nursing and Alicea’s supervisor, said Alicea’s help came just in time for the family with whom she worked.
As the family’s mother was in the last few months of her pregnancy, the care Alicea provided to their ill son was key in a hectic time in their lives.
The MFRF places only one or two FIU students into homes at a time, so this new program is very competitive.
To qualify, students must be in the RN-to-BSN program in the College of Nursing, as a licensed nurse seeking a bachelor’s degree. A background in pediatric care is preferred.