Baby Emily, her family continue to touch people's lives

A Christmas Wish, part 2: Defying the odds

Despite her numerous health issues and hospital stays, Emily Kramer tries to keep a smile on her youthful face. The now 13 year old was back in familiar territory on a recent visit to the Special Learning Center. Emily attends another school but is able to go to the center during the summer to continue her therapy.
Despite her numerous health issues and hospital stays, Emily Kramer tries to keep a smile on her youthful face. The now 13 year old was back in familiar territory on a recent visit to the Special Learning Center. Emily attends another school but is able to go to the center during the summer to continue her therapy.

In 2001, readers of the News Tribune were introduced to Emily Kramer, better known as Baby Emily.

She was born with a rare condition known as DiGeorge Syndrome. Abnormal thymus glands left her with practically no immune system, and she's been seriously ill numerous times with infections and pneumonia.

Thirteen years later and despite her ongoing battle with health problems, Emily is continuing to defy the odds.

"Even though she suffers, I'm proud to tell how she's touched people's lives and how people have touched our lives," said Emily's mother, Mary. "She's spent 1,000 days as a patient in hospitals, been air lifted 17 times, been to St. Louis 20 more times in mobile ICU units. We give her IVs at home. We've got oxygen and all the special equipment. You can't imagine how ill she was or has been."

Mary said for Emily's condition, the mortality rate was 85 percent in the first six months of life.

"When she was very young, she got outpatient therapy here," said Special Learning Center Director Debbie Hamler. "She has always been adverse to noise and still is very shy and not too good being in crowds of people. So we set up a small classroom for her and a couple of other children until she could transition into a more traditional setting."

Emily goes to school at Fatima, and every summer comes to the center for occupational therapy.

"She carries her suffering so gracefully sometimes people don't know she's sick," Mary said. "The load gets heavy, but me and my kids have plastered smiles on our faces and grab each day by the tail and go."

"The family has been struggling over the past few years, driving to St. Louis to the hospital," said Hamler. "It's taken the wear and tear out of them. Mary is a single mom and raising the family on her own. Emily has been ill the last six months so Mary can't work, and they are really struggling more than usual."

"They are a treasure and a really neat family," Hamler added. "With what they have to deal with in their everyday lives, it make me feel wimpy."

Mary says she can't thank the Special Learning Center enough for what they've done for her family.

"What I brought in and took out years later is unbelievable," she said. "What they did at the Special Learning Center not only helped her, but all the family. You can't wrap your head around how sick you can be with this. It's affected every single part of our lives. While it's devastating financially and emotionally, it has also has enhanced our lives because she brings so much happiness to our family. I wouldn't trade it for anything."

If you wish to donate

In order to be tax deductible, checks must be made payable to the United Way of Central Missouri and the United Way must retain the right to specifically determine who the donation will benefit.

The United Way will establish a Christmas Wish fund, and donors can give a gift "in the name of" someone specific, or a United Way partner agency.

A volunteer committee will oversee the distribution of these funds.

If you want to help fill a Christmas Wish, mail checks to United Way of Central Missouri, 205 Alameda Drive, Jefferson City Missouri 65109. "News Tribune Christmas Wish Fund" should be noted on the memo line of the check.

Questions may be directed to Ann Bax, President of United Way of Central Missouri, 573-636-4100, or [email protected].

Accompanying article:

Special Learning Center strives to expand abilities of every child