PEORIA — Most people in Brianna Lankford’s situation would be freaking out, but Lankford was surprisingly calm.
Maybe it’s because being homeless is not the first — or even the worst — disaster weathered by the 24-year-old single mother of a severely disabled child.
Lankford and her daughter have been living in cheap motels since Nov. 4.
“I have talked to someone at the Salvation Army, and I think they are going to help me get into a place,” she said while sitting in the lobby of a Peoria hotel Tuesday morning. “I’m hoping to hear back on my application today.”
Lankford, 24, fell behind on her rent last fall and decided to move out before she got evicted. She had a little savings and figured she would find a cheaper apartment quickly, but it’s taken longer than she thought, and her savings have dwindled.
The problem started last summer when Lankford was unable to find childcare for Camilla after school let out. Camilla goes to Thomas Jefferson School. Camilla’s father used to help, but he recently moved to Chicago for school, and Lankford couldn’t find a childcare agency willing to take a severely disabled child. The lack of childcare kept Lankford from working as many hours as she typically does. Then in the fall, after Camilla returned to school, she caught a virus and Lankford had to take time off work to care for her. It was the last straw.
Lankford has two jobs, one at Panera Bread and the other at Big Lots, both in the Northpoint Shopping Center.
“Right now I’m on a leave of absence, but it’s not paid,” she said.
As Lankford talked her daughter dozed in a nearby child seat. Born with a genetic disorder called Trisomy 18, Camilla was not expected to live past her first birthday. She turned six last fall.
“We had a unicorn cake for her birthday — unicorn should be her nickname because unicorns are really rare,” said Lankford.
Camilla, too, is rare — very few children with Trisomy 18 survive to the age of six.
“I want people to know how special Camilla is, and how much of a miracle she is. She can’t talk, she can’t say ‘I love you mamma,’ but I know she does. I can see it in her eyes. She laughs sometimes, she bats her arms. I want people to see Camilla — and all disabled children — for how special they are. They matter too.”
Lankford got pregnant at 18, and though she was not prepared to have a child, she quickly fell in love with the small life growing inside her. The pregnancy appeared normal until she was four months along when a sonogram revealed a spot on the baby’s brain.
“They referred me to a specialist at OSF and they told me she has hydrocephalus, which is water on the brain,” said Lankford. The child would have to be delivered by cesarean, and afterward undergo surgery to install a shunt to drain the fluid. Lankford had a lot of questions her doctor could not answer, and she was frightened.
“I felt like I barely knew how to take care of a normal child, let alone a disabled child, but I thought 'the fight and love in me can do this, no matter what. I am strong,'” she said.
After birth Camilla spent a month in the pediatric intensive care unit. She wouldn’t take a bottle, so a permanent gastric tube for feeding was installed before Lankford took her daughter home.
Doctors did genetic testing on Camilla shortly after birth, but there was a three-month wait for results. In the interim Lankford got to know her daughter.
“She looked normal, like nothing was wrong,” said Lankford. “She was progressing well, though she was a little slow.”
Lankford’s hopes were shattered when the test results came back.
“It was the second hardest day of my life,” she said.
Camilla has a mosaic form of Trisomy 18, a malformation of the 18th chromosome, said Lankford. The doctor hadn't seen that particular type and couldn't predict exactly how it would affect her, but he didn’t hold out much hope.
“He said that kids with Trisomy 18 only have a 10 percent chance to make it past one-years-old,” said Lankford. “They don’t know why, but their brains just shut down and they pass away.”
While Camilla did not die in her first year, she did start having debilitating seizures. Prior to the first seizure she was raising her head off the ground and doing other normal baby things, but the seizures put an end to any illusions of normalcy.
“As soon as they put her on this medication called phenobarbital, it took away all her upper body strength, and she was in a daze,” said Lankford. “For about a year and a half she was on four seizure medications and she was still having 10 seizures a day. Then one doctor here in Peoria said ‘have you tried the ketogenic diet? It helps seizures.’”
Lankford took Camilla to a specialist in Chicago to get her started on the high-fat, low-carbohydrate diet. Lankford learned how to mix a day’s supply of food for Camilla from a special powder. The results were almost immediate.
“Very quickly the seizures started to subside, from 10 a day to five, and then to two,” said Lankford. “Now she has maybe one a week. We still have to go to Chicago for checkups. They are monitoring the diet, and she is still on three seizure medications, which they are trying to wean her off of. It’s a process.”
The specialists in Chicago have been so helpful that Lankford wants to continue the periodic appointments, even though she struggles to afford the trips. When they had to miss her fall appoint due to lack of funds, Lankford started a Go-Fund-Me account, www.gofundme.com/f/help-our-camilla. Though a little over $1,000 has been raised, all the money has now been used to house Camilla over the past month.
Lankford is holding on to hope that they can make it to Camilla’s December appointment. Hope and faith are what get her through most days.
“The one thing that keeps me going is God. He takes care of her every day, just by giving me the strength to take care of her.”
Leslie Renken can be reached at 686-3250 or firstname.lastname@example.org. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.