West Pasco Parents Dream of Their Child Walking

Kiley Griggs is nearly 3 years old, and she can already tell her mother “I love you“ in Spanish. She can recite from memory some of the words to Max the Minnow, a picture book, in a soft voice.  

She can’t walk or crawl or sit up on her own.

Kiley, born prematurely, was diagnosed with cerebral palsy. Now, she’s realizing her condition is making her different from friends who can walk.

“She’s starting to understand now that ‘I should be able to do this,’” said Kiley’s mother, Lori Griggs. “Our dream, since, she is so smart, is for her to walk."

So the dream was entered into the Upromise Dream Wall Sweepstakes. If the Griggs win, they want to use the money from the contest to pay for new therapy that will strengthen Kiley’s balance, coordination, motor skills and independence. And you can help by voting for Kiley.

Lori, Kiley and Jason "Jay" Griggs live in the Riverchase subdivision, just outside New Port Richey. Lori Griggs is a teacher at Rushe Middle School in Land O’ Lakes. Jay, her husband, is a firefighter in Dunedin. Kiley, who tested to show she has the intelligence of a 5-year-old, enters a voluntary pre-kindergarten program for students with disabilities at Odessa Elementary this month.

In the Upromise Dream Wall contest, entrants post their dreams online and readers vote on their favorite entry by “liking” it. The entrant whose dream has the most “Likes” on Sept. 29 wins $10,000. The contest is run by Upromise, a rewards program run by Sallie Mae in which credit from certain purchases can be invested into a savings account or be returned to the client in a check.

The Griggs want to invest the contest money in the TheraSuit Intensive Method, which is offered at Lampert’s Therapy Group in Largo and All Children’s Hospital in St. Petersburg. 

This therapy teaches children correct methods of movement. It improves balance, awareness and coordination. The children are outfitted in a suit equipped with bungie cords. The patients perform exercises while strapped into a Universal Exercise Unit. Therapy can use a system of pulleys, straps and splints, attached to a cage-like structure. The exercise unit can also be used for a “Spider Cage” therapy, in which a web of elastic cords attached to the patient's suit  suspends them upright. Regardless, the patient attends three-hour therapy session each day for 15 days. 

The therapy would cost $6,700 out-of-pocket at All Children’s and about half that in an offer from Lampert’s, the Griggs say.

"Insurance won't cover it because it's intensive therapy," Lori said.

Lori Griggs has worked for the Pasco County schools since 2001, but she took all last year off to care for Kiley, who was born three months prematurely with cysts on her brain. At one time, Kiley went to six therapies a week.

Kiley now goes to four sessions a week, mostly covered by Jay’s insurance. She travels in a wheelchair, which was partially paid for with donations.  

The Griggs have tried to get government financial aid, but they have been unsuccessful. This has frustrated Jay Griggs. The co-pay for Kiley’s therapies each month is about $240, equivalent to a car payment, Jay says. Lori’s time off of work has made paying for Kiley’s therapy all that more difficult.  

“I don’t understand how a working family can’t get help,” Jay said.

What will Kiley be able to walk after the therapy? The Griggs only know what they've been told.

It will push her progress forward, Lori said. There’s a plateau that patients with cerebral palsy face, and Kiley, who turns 3 on Oct. 3, hasn’t reached it. Now's the time to make progress.

One-hundred percent recovery for Jay would be seeing Kiley able to sit up and grab a walker, he said.

“That would be wonderful,”  Lori said.

How can you help the Griggs realize their dream?

After Bay News 9 reported on their situation last month, the Griggs got a boost, but they still need help to win.

Vote for the dream in the Upromise Contest here. http://www.upromisetodream.com/ind-stories.html?storyID=6761

*Story last updated at 3:30 p.m. Sept. 6, 2011