Services For People with Disabilities

You wouldn't know it from her shy personality, but Jaylin Sims is one tough twelve-year-old.

At age 12, Jaylin is already a survivor, battling a string of medical complications caused by a rare congenital condition called biliary atresia. A stroke as a baby left her paralyzed on her left side, and she also suffered an intracranial hemorrhage that caused significant brain damage.

But today, with her own courage, a loving family and the support of Lutheran Services in Iowa (LSI), Jaylin is thriving.

Biliary atresia means Jaylin was born without the normal liver ducts that work to remove waste from the liver. At three months old, she had an operation called a Kasai procedure to connect her small intestine to her liver. However, the liver was already too far gone, and soon after Jaylin had a stroke that almost took her life.

"It took place the day after my birthday," said Jaylin's mother, Amreica Sims. "She was bleeding on the brain and had a stroke, and she coded. She was on a ventilator, and the doctors said she didn't have much longer to live. They talked to us about donating organs because she wasn't going to make it."

Jaylin did make it, but her future was still uncertain. She had lost all her strength and mobility and needed a liver transplant. There were concerns that she might not be able to function mentally.

After a year of waiting, Amreica finally received the page that there was a liver available for Jaylin.

"At midnight we got the word they had the liver for her," she remembered. "She was a year and a half old and couldn't walk."

Even after the liver transplant, Jaylin’s struggles weren’t over. She has been through orthopedic surgeries to help her walk, seizures and a virus that attacked her new liver, but her overall progress is a miracle.

"Her doctors were amazed," said Amreica. "She’s doing better than she should be, considering her condition. The right side of her brain is gone, but she's made modifications to use the other side of her brain and she's in regular classes."

After moving to the Waterloo area four years ago, the Sims family started using LSI's services for people with disabilities program in 2006. Jaylin gets supported community living services and respite care, which allows her mom a break from the demands of care giving. Two summers ago she had a surgery that kept her home-bound for six weeks, but LSI staff was there to provide support and care.

"Since she was four months old, I've been doing all of her medical care," said Amreica. "It felt odd letting someone else do it and also a relief. I've learned to let go and step back. Now I'm trusting and depending on someone else. Everyone we’ve worked with we’ve loved, and they loved her too."

Jaylin and her LSI caseworker Veronica work on socialization and goals such as cooking, using money or learning what to do in an emergency. They also do community activities together like going to the park or a community dance party on Friday nights.

"Before she had stranger anxiety," said Amreica, "but now she's able to speak up and tell her teacher if she doesn't understand something."

Through LSI, Amreica has been introduced to other parents of children with disabilities and support groups. The additional support also allowed her to go back to nursing school.

"This is a great service," she said. "It was a big step, but it’s been so helpful to advance beyond just her physical needs."