"It's her spirit," said Mary Grace Ruiz, when asked to comment on what makes her great-granddaughter Lila Grace Ruiz shine as if she hasn't had almost one operation per month since her birth three years ago.
"It's like she accepts things as just being natural, that this is the way it is and I'm just going to go with it," Ruiz added. "She never complains. She never lets it get her down."
Lila, she added, "was named after me, I'm Mary Grace and she's Lila Grace."
Grace, indeed, is how Lila Grace Ruiz, a Brandon resident, deals with her disorder, megacystis microcolon intestinal hypoperistalsis syndrome, according to the people who know and love her.
Her three years "have been filled with love and sweetness," but also with "29 surgeries to date, monthly hospital stays and visits to specialist doctors in four states," according to the promotional flier for the April 28 fundraiser on her behalf in Greater Brandon, at the Winthrop Pole Barn in Riverview.
"Shockingly, only 15 to 25 people with Lila's condition are alive in the United States today," notes the flier.
At the Winthrop Pole Barn fundraiser, shortly before it ended, Lila Grace Ruiz made it clear that she was anything but a playful, mischievious and delightful preschooler, as she engaged in a game of water balloons with her friends and relatives (see attached video).
"It's hard, we take it one day at a time, and we're just very, very grateful she is able to still play and be happy on her good days," said Lila's mother, Maghann Ruiz.
As for the large crowds that filled the Winthrop Pole Barn on her daughter's behalf, Ruiz said she was "amazed" at the support shown by her Greater Brandon community.
"It just shows the community comes together when it needs to," she said.
Event organizers say all proceeds will go to Ruiz and her family in support of her medical care.
To donate online via PayPal, visit staystronglila.com. Or, call Sandy Martinez at: 813-309-2395 or 813-681-2395.
What To Know About Lila's Disorder
(Source: "Megacystis Microcolon Intestinal Hypoperistalsis Syndrome," by
Prem Puri and Masato Shinkai, Children’s Research Centre, Our Lady’s Hospital for Sick Children, University College Dublin, Dublin, Ireland.)
- MMIHS is a rare and the most severe form of functional intestinal obstruction in the newborn.
- The major features of this congenital and usually lethal anomaly are abdominal distension, bile-stained vomiting, and absent or decreased bowel peristalsis.
- Abdominal distension is a consequence of the distended, unobstructed urinary bladder with or without upper urinary tract dilation.
- Most patients with MMIHS are not able to void spontaneously.
- Bloomingdale-Riverview Patch Editor D'Ann White interviewed Lila Grace Ruiz' mother in this report.