Des Plaines community rallies around child with rare disorder

Sitting in his favorite tiny red wooden chair, Teddy Christiansen peers out the window, smiling as he watches his older sister, Raelyn, play in the front yard.

Before long, Teddy springs from the chair, itching to go outside himself. The bespectacled 33-month-old is everything he should be at his age: full of mischief, playfulness and curiosity.

Weighing roughly 22 pounds and at 38 inches tall, Teddy teems with energy, climbing onto every piece of furniture in the house, mimicking everything Raelyn does.

His mother, Jenny Christiansen, says Teddy loves puzzles, stacking toys and throwing balls. He also throws temper tantrums like any child going through the “terrible twos,” and enjoys horsing around with sisters Raelyn, 4, and 11-month-old twins Bridget and Josie.

“He’s normally very active,” said Jenny Christiansen, 36. “He’s very happy. You wouldn’t know, to look at him, that he’s that sick.”

The surviving half of prematurely born twins, Teddy was one pound, seven ounces at birth and spent seven weeks in a neonatal intensive care unit.

The Christiansens, formerly of Des Plaines, barely had a chance to mourn the death of their 3-month-old son Kenny, Teddy’s twin brother who died of complications from pertussis, a respiratory infection commonly known as whooping cough. Six weeks later, Teddy also developed the cough but fought it off.

Since then, Teddy has undergone hernia surgery and three laser eye surgeries. Last July, he was hospitalized with an unknown virus causing dehydration.

That’s when doctors discovered a problem with Teddy’s bone marrow. His hemoglobin, the protein molecule in red blood cells that carries oxygen, started to drop.

“He appears healthy except for the fact that he looks small and thin,” Jenny Christiansen said. “We thought his development delays were due to his prematurity.”

After nearly a year of not knowing exactly what was wrong with Teddy, parents Jenny and Brad Christiansen recently got word confirming their worst fears.

Teddy has been diagnosed with a rare genetic disorder – dyskeratosis congenita – that causes bone marrow failure, or the inability of marrow to produce enough blood cells. He has a rare variant of the disorder, known as Hoyeraal-Hreidarsson syndrome, and a high likelihood of developing leukemia or solid organ cancer.

“Now that we know what we are dealing with, that will help us determine the best treatment for him and where we can get (it),” said Jenny Christiansen in a determined voice.

Hometown support

Frequent visits to specialists and hospitals; Teddy’s weekly sessions of physical, occupational, developmental and speech therapies; and travel and other expenses tied to his illness are taking their toll on the family’s finances.

Friends and family members are organizing a fundraiser dubbed Teddypalooza to help the Christiansens offset the costs. It will be held from 4 to 10 p.m. Saturday, June 20, at the St. Stephen Church gymnasium, 1280 Prospect Ave. in Des Plaines.

Though the Christiansens now live 40 miles northwest of Des Plaines in Union, both Brad and Jenny grew up in Des Plaines and graduated from Maine West High School, and Brad now works with the village of Arlington Heights public works. The hometown support for Teddypalooza has mushroomed through word-of-mouth, e-mails, mass mailings and a dedicated page on Facebook.

“A lot of our friends from high school are coming to the fundraiser,” said Kelly Roback of Des Plaines, 34, one of the organizers who went to school with Jenny and Brad. “It’s almost going to be like a mini-reunion. We all have kids the same age and it just kills me to see what they’ve gone through. I don’t know how they even get out of bed, yet they do with a smile.”

Roback said she hasn’t set a goal for the fundraiser, but she hopes to collect enough money to supplement what the Christiansens’ health insurance doesn’t cover.

Funds raised could help the Christiansens with expenses such as specialized shoes for Teddy or a walker, buying food during long hospital stays, getting a baby sitter for the couple’s other children, and helping pay for gas and car maintenance, Roback said.

“It’s all those things that people don’t really think about when you’re thinking about a disease or long-term illness,” she said. “If we make $100 or $10,000, they are appreciative of anything we do. So many people want to help, but they don’t know how. It gives them a way to feel good about being able to help.”

As word gets around, there’s been an outpouring of donations, silent auction and raffle items from individuals, Des Plaines- and Union-area businesses, the Des Plaines Police Department and the park district.

“It’s unbelievable,” Jenny Christiansen said. “They are just going above and beyond the call of friendship and sisterhood.”

The community response and support has been overwhelming, say Teddy’s grandparents, Tom and Jan Christiansen of Des Plaines.

“Just to look at the Web sites. We’re amazed,” said Tom Christiansen, 59, formerly a Des Plaines alderman for 20 years.

There have been more than 1,600 visits made to the Web site,, where Jenny Christiansen posts weekly journal entries giving updates about Teddy’s progress.

“I’m humbled,” said Jan Christiansen, 58, a social worker for the village of Wheeling. “I could cry. It’s very emotional. We’ve always taught our children to be independent and it’s hard to ask (for help). But the love of this little Teddy, our grandson, I think is our driving force. I hope it will be overflowing capacity (at the church), truly.”

Finding a cure

The Christiansens are trying to get Teddy into a National Institutes of Health research study on inherited bone marrow failure syndrome since he is at increased risk of developing cancer. But that may not happen until the fall, a spokeswoman said.

Meanwhile, a more pressing concern is a complication of Teddy’s condition that creates a gradual narrowing of the esophagus that doesn’t allow him to swallow.

Every eight weeks, Teddy has his esophagus expanded and gets a transfusion of platelets that allow his blood to clot. He now primarily eats through a feeding tube to supplement what he can’t get through his mouth, Jenny Christiansen said.

It’s likely Teddy will need a bone-marrow transplant, and luckily sister Raelyn is a perfect match. But first, Raelyn must be tested to ensure she doesn’t have the same genetic disorder.

“The disorder mostly affects males, so we just need to double-check that she’s going to be a viable candidate for him,” Jenny Christiansen said.

It’s unclear how much Raelyn truly understands about her little brother’s condition, yet she cheerfully declares, “I’m going to give him my bone marrow.”

Raelyn’s blood will be tested next week and the results should be back within a few weeks, Jenny Christiansen said.

Teddy could have his bone marrow transplant performed at Children’s Memorial Hospital in Chicago, which has a stem cell transplant unit. The other option is the University of Minnesota Children’s Hospital in Minneapolis, home to one of the leading experts on bone marrow transplants, Jenny Christiansen said.

“We would like for him to remain stable and to put it off forever, but that’s not likely,” Jenny Christiansen said. “Today, he is not in need of the transplant immediately. He could start showing failure even worse, and then it would be sooner (rather) than later. We try to stay positive, and it’s hard sometimes.”

If you go

What: Teddypalooza, a benefit to offset the costs of Teddy Christiansen’s treatments for bone-marrow failure

When: 4 to 10 p.m. Saturday, June 20

Where: St. Stephen Church gymnasium, 1280 Prospect Ave., Des Plaines

Raffle prizes: Spa getaways, overnight hotel stays, Harley-Davidson motorcycle rentals, gift vouchers for restaurants, gift baskets, Des Plaines Park District golf and pool passes

Entertainment: Carnival games for children and live music

Tickets: All tickets, including for food and drinks, are sold at the door

On the Web

Information about the fundraiser – or search for “Teddypalooza” on Facebook

Updates on Teddy’s condition –

Information on inherited bone marrow failure syndrome –

Copyright © 2009 Daily Herald Inc. All rights reserved.