Miracle child continues to fight

Lilly Barnett is 10 years old. Fifteen months ago, she nearly died in a crash on Route 1 near Milford.

Her limp body was flown to A.I. DuPont Hospital for Children in Wilmington. Lilly was unresponsive; she had broken ribs, a collapsed lung, a bruised liver and a brain injury so severe children rarely survive it.

In the months that followed the July 26, 2011, crash Lilly underwent an emergency operation to open her stomach to drain fluids.  Her other lung collapsed, and so much fluid accumulated in Lilly’s body, it distended her stomach.

Lilly was diagnosed with diffuse axonal injury to the brain, a diagnosis similar to shaken baby syndrome, but it occurs in an older child. The cognitive part of her brain, where learning takes place, was cracked and torn.

“The brain does reconnect, but it can reconnect in a different pattern. It is just a waiting game. It can take up to seven years to know where Lilly will end up with any limitations,” said Kelly Barnett, Lilly’s mom.

Today, Lilly is still progressing every day of her life. Even though her recovery might take years, she has been marking several one-year milestones over the past months.

“Physically, I would say Lilly is about the same,” said Bryan Barnett, Lilly’s dad. “She could walk with help or with the walker, but she cannot get up without our help, and her legs still need braces.”

Lilly’s parents say Lilly can bounce herself a little bit if you hold her up. She still has a feeding tube in her stomach; her parents would like to have it removed, but that requires another operation. “Besides, it is nice to feel safe knowing we can hydrate and feed her immediately when Lilly needs it,” Kelly and Bryan said.

Cognitively, Lilly has made huge improvements. She laughs all the time and makes everybody around her laugh. Lilly and her younger sister, Summer, are fighting now, as any other siblings would do.

“Summer bugs me,” Lilly said, which makes Kelly and Bryan smile.

“Her personality is what we see the most of,” Kelly said.

“If we take physical, cognitive-functional and personality, her personality is what has blossomed,” Bryan said.

Hurdles still to overcome

Bryan said Lilly has two major hurdles to overcome.  One is called disconnect, referring to the signal from the brain to the nerves in the muscles that move the leg, which is broken somewhere. Lilly also has what doctors call excessive tone in the muscles through her left side, which means that Lilly’s muscles and her ligaments are extremely tight. Excessive tone does not allow Lilly’s left leg to unlock.

“As we take a step, our knee unlocks when a foot comes forward. Lilly’s does not open up all the way, and her left arm is the same way,” Bryan said.

Lilly attends fourth grade at Milton Elementary School Mondays, Thursdays and Fridays. She is also continuing therapies and at A.I. duPont Hospital twice a week, including pool therapy.

“In the pool I go under water with goggles, and I walk there,” Lilly said excitedly.

At Milton Elementary School, most classes are held on the upper floors, while the cafeteria is downstairs. It’s a problem, because Lilly cannot go up and down stairs in her wheelchair.

Until a plan is established to navigate the stairs, Lilly is taking a lot of art and music.

“Lilly is not really with her class all the time. This is the only problem, but she is there, which is good. We are just not getting the full advantage of her being there,” Kelly said. “We are still waiting for the chair rail lift to be installed to get Lilly to the second floor, but it seems like a lot of red tape. Hopefully, by November, it will be installed.”

Lilly received a Distinguished Student Award for her success in both reading and math, which she earned before the tragedy. Lilly’s reading and writing scores are still in the 95 percentile, but her math skills were  lost after her brain injury. She’s working hard to recover, and is now at a second-grade math level.

“Lilly’s done a lot,” Bryan said. “There are calculators to help her; reading and writing are more important.”

Lilly is patiently waiting for the lift to be installed at school. “I cannot go to the library, because it is on the third floor,” Lilly said.

Kelly Barnett said traumatic brain injury is not a common diagnosis among children. Support groups address the problem for older people or soldiers, but there’s really no local group for a child.

“I would really like to be a part of something to tell Lilly's story for others, to give hope, inspire and prove that TBI does not always mean a vegetable state. How I can do this, I am not sure. I just feel it is a calling of mine,” Kelly said.

Fundraiser set Oct. 20

Presented by Smokin D’z and Dawn’s Country Market, Family Fun Day on the Farm will be held from 10 a.m. to 6 p.m., Saturday, Oct. 20, at Dawn’s Country Market as second benefit for Lilly Barnett.

The activities will include a magician, live music by local artists, moon bounces and face painting. Other activities include games for all ages, feeding and learning about the animals, pony rides and paint the pumpkin.

Smokin D’z BBQ asks everybody to come hungry. Proceeds from food sales will go to Lilly’s direct care and recovery.

Dawn’s Country Market is located at Rt. 1 and Caveneck Road, Milton. For more information about the event call 302-542-9931.

If you would like to learn more about Lilly Barnett’s story, visit her site at caringbridge.org/lillybarnett.