Gilbert’s Water Tower will light up in red and white for three nights beginning Thursday to bring awareness about people like 7-year-old Aubrey Britt, who have hypophosphatasia.
The rare genetic disorder, also called HPP, is characterized by the abnormal development of bones and teeth and severe forms of it affect an estimated one in 100,000 newborns.
“There is no cure,” said Mesa mom Amy Britt, who is co-regional leader of the Southwest chapter of the Soft Bones Foundation. “When she was first born there also was no treatment that was FDA approved. But we were able to find a clinical trial for a drug that she has been on since she was 5 weeks old. At this point the only treatment for hyposphatasia is daily injections.”
Aubrey’s trial medication was finally FDA approved in 2015 as the only treatment for HPP.
According to researchers, the survival rate for children who develop the disorder in the womb such as Aubrey or at less than 6 months old is poor with an overall mortality rate of 73 percent at 5 years.
While Britt was just 20 weeks into her pregnancy, a routine ultrasound unveiled Aubrey had bowed femurs but doctors could not give an official diagnosis until she was born.
“When she was born, she started having seizures,” Britt recalled. “We got the confirmation from the doctors. There was no cure. It’s like brittle-bone disease.”
Aubrey also has other medical conditions not directly related to HPP and has had a number of surgeries, including having a VP shunt placed to treat hydrocephalus and placement of a gastrostomy tube after she was diagnosed with failure to thrive, according to Britt.
Aubrey was smaller than her peers and didn’t take her first steps until she was 4.5 years old. She has a wheelchair that she uses periodically.
“Physically, her growth is below zero percent,” Britt said. “She’s slightly over 3 feet tall and 33 pounds.”
And, Aubrey doesn’t have any teeth, losing them before she turned 1 but X-rays show she does have adult teeth that are moving to the surface, Britt said.
“She lost her first tooth at 9 months old so she doesn’t know any difference at this point,” she said.
Aubrey has learned to cope with her physical challenges and is enrolled in a public school. In kindergarten last year, she even earned a Student of the Month award.
In celebration of Aubrey beating the odds, the foundation, which has red, white and black as its logo colors, applied for and was granted the lighting of the tower. Saturday also is Rare Disease Day.
The town lights up the 133-foot-tall tower located downtown in specific colors in recognition of community initiatives and various holidays. Groups can submit to the town applications for the tower lighting to draw attention to their cause.
“We have had 34 lighting requests from the public since we began the program in 2018,” spokeswoman Jennifer Harrison said in an email. “This does not include town initiatives or holidays.”
She added the town has received 10 requests already for 2020. “The water tower lightings are very popular with the community,” she said. “In fact, they are some of our most popular posts on social media.
“In 2019, we had 96 water tower lighting posts across Twitter, Facebook and Instagram with nearly a million impressions and 66,405 engagements.”
The tower was built in 1925 and was opened up to the community in 1927. Before then, residents had to get water from their own wells, according to the town. In 1985, the water tower was decommissioned and filled with sand and still is to this day.