Posts Tagged cerebral palsy

A Miracle Every Day

February 18th, 2011 | Author: Katelyn Turner

For most 5-year-olds, celebrating a birthday is just one in a long line of happy, celebratory days. For Justin Truett, celebrating his fifth birthday in November 2010 was really nothing short of a miracle.

Justin has congenital CMV, which comes with the following challenges: cerebral palsy, profound brain damage and SUID (Sudden Unexplained Seizure Death), to name a few.

His mother Desiree, an Alpha, and husband Timothy adopted Justin in 2007. When they adopted him, Justin weighed only 14 pounds.

“Justin was 1, almost 2, and he couldn’t hold his head up. We were told he was blind and deaf and didn’t understand anything that was going on,” Desiree says. “So we focused on taking care of his basic needs. Long story short, he became a permanent placement [in our family].”

Desiree and Timothy married in 2006, each with a child from a previous marriage. They both knew they wanted a lot of kids, and while Desiree was expecting her first child, they began looking into foster care and adoption and found out about children, like Justin, who were considered “un-adoptable” because of their increased needs, and because they weren’t expected to live long lives.

“We focused on a girl named Jamie that was on this list. She was blind, and had 15 failed placements by the age of five. We really wanted to adopt her, and it took two years from the time we found her to the time she actually moved in,” Desiree says. “While working on Jamie, we got a call about two little boys that needed placement for a week or two, one was special needs and one wasn’t.”

One of these boys was Justin.

Although previously told Justin was deaf and blind, Desiree says after six weeks of regular food and a lot of stimulation, Justin started to make eye contact.

“[When we got him] he was in such a chronic state of starvation, that everything had shut down. But because he was so disabled, doctors told us he would only live to be three. At that time he was almost two. His third birthday was a huge celebration for us, and right after that, his adoption went through,” Desiree says. “He is doing great. All of his organs are doing perfect and right now his risks are pneumonia and seizures.”

Justin’s seizures are a major concern for the Truett’s. They can range from 1-2 a week up to 100 a day.

Desiree and Timothy with children (in back) Dakota, 9 Jamie, 8, (in front) Kaylee, 7, Justin, 5 and Abigail, 4.

“One day, out of the blue I walked past his room when he was about four-and-a-half, and he was completely unconscious, with one of his legs kicked to the right. It wasn’t anything like a normal seizure, and it wasn’t stopping, either,” Desiree says.

They took Justin to the ICU, and he was comatose for three days.

“He did wake up, and I was afraid he wouldn’t be Justin anymore. He has an amazing personality and the funniest sense of humor, so the first thing I did was tell him inside jokes we have, and he smiled, and I knew he was there,” Desiree says. “But he was paralyzed on his entire right side. That took over six weeks to come back through a lot of physical therapy.”

What concerned Desiree and Timothy about this episode was they were told even machines wouldn’t be able to detect the seizure Justin had. That’s when they were told about seizure alert dogs.

An assistance dog would make sure Justin got the help he needed at night and if Desiree and Timothy weren’t in sight. The Truetts are partnering with 4 Paws for Ability to acquire a dog that would allow Justin the security he needs to enjoy his life to the fullest.

The Truetts have raised the money needed to acquire this dog for Justin, and are now helping another family raise money for their son, Alex.

Desiree, who in addition to Jamie and Justin has three children with her husband, is a ZZ Alpha and has to take time to take care of herself and her condition. She was diagnosed in 2008, around the time she and husband Timothy were adopting a sixth child. They decided to stop the adoption and Desiree became very involved in the Alpha-1 community in her town of Maricopa, Arizona.

Desiree says it’s a true team effort with Timothy, who is a Police Sergeant.

“We get to witness a miracle every day. Every single day, Jamie or Justin do something medically impossible. And it’s so fulfilling and I feel so honored that I’ve been chosen for this challenge,” Desiree says. “It helps with my Alpha status because it gives me no time to dwell on it. Nobody in the community looks at me as somebody who’s struggling with an illness, more, they come to talk to me about how to get into adoption.”