Lauren "LoLo" Elise Loredo, is a precious 3-year-old girl who loves horses and has started ballet and tap dancing at the Stephenville Dance Center. Her cousin Colbi, a local first-grade student, gave LoLo the nickname “Rainbow” on the day she was born.
When she was only 10 months old, LoLo was diagnosed with a rare, progressive genetic disorder known as Alexander disease.
There is no known cure.
The prognosis is described as “poor,” and the average lifespan for infantile Alexander Disease is six years.
LoLo’s parents, David and Deidre (Doggett) Loredo, take her to weekly physical therapy sessions trying “to keep her as healthy and strong as she can be for when that call we pray for comes, saying ‘There is a treatment.’”
LoLo and her family have been chosen by Stephenville High School’s football coaches as this year’s Heart of Gold recipients. This marks the 10th year for the Heart of Gold game.
This year’s Heart of Gold game is Friday at Memorial Stadium, matching Stephenville against Georgetown.
LoLo and her parents will be on the field for a brief ceremony just prior to the 7 p.m. kickoff.
Heart of Gold T-shirts printed by Barefoot Athletics are being sold for $12 (cash or check only), with proceeds going to the Heart of Gold Foundation for the Loredo family.
The T-shirts will be available while supplies last starting Wednesday at the Barefoot Athletics store in Stephenville. Remaining T-shirts will be available at the gate Friday.
LoLo is the granddaughter of Dr. Kelly and Tawnya Doggett of Stephenville and Armondo Loredo of Fort Worth. They family said they, along with her uncle Dustin and aunt Juli Doggett, adore LoLo.
“Her favorite person in the whole world is her cousin Colbi who is a first grader at Chamberlin (Elementary School),” according to the family. “She loves teaching LoLo new things and playing together every day.
“They love to sing and dance. Colbi gave her the name Rainbow the day she was born.”
LoLo, a student at Kinderbridge, is in the Tarleton State University TREAT Program, and her family says she is “a natural” at horseback riding. Her favorite horse is named Peppy.
LoLo’s journey can be followed online by joining the Lauren’s Rainbow page on Facebook.
Since Alexander disease was discovered in 1949, only about 500 cases have been reported world-wide. The disorder is not fully understood, but there seems to be several variants, which progress at different rates.
The family has learned that the disease damages and deteriorates the myelin sheath, which surrounds and protects nerve cells in the brain and spinal cord. That damage causes the cells to stop working properly.
A message from LoLo’s family also stated:
“LoLo is regularly monitored by her neurologist, Dr. Amy Waldman at Children’s Hospital of Philadelphia, who loves LoLo and is thrilled that she is thriving and doing so well. She says Lauren is writing her own story.
“Dr. Waldman along with Dr. Albee Messing of the Weisman Center at the University of Wisconsin-Madison collaborate in researching potential treatment for Alexander disease. Clinical trials are still some time away, but research shows that a cure for Alexander disease may also be beneficial to treat ALS, Parkinson’s disease, Alzheimer’s disease and many other conditions.”