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Preparing for the unthinkable

  • Published
  • By Staff Sgt. Christie Putz
  • 375th Airlift Wing Public Affairs
New parents often complain with love that their babies grow up too quickly. But at around seven months old, Elise Rochman's parents began to worry the opposite - that she wasn't growing up quickly enough.

Elise still wasn't sitting up on her own, a task normally mastered between four and seven months. Not wanting to be an overanxious mother, and after some reassurance from her pediatrician, Capt. Kerri Rochman reasoned that her daughter would develop at her own pace.

However, it would be another four months until Elise's diagnosis would finally give her parents a glimpse at what that pace, in either direction, would be.

At 11 months old, Elise was diagnosed with infantile Tay-Sachs disease, a rare genetic neurodegenerative disorder of which only 25 cases were reported in the United States last year. 

Children with Tay-Sachs normally appear healthy until they reach six months of age. At that point, they slowly start regressing until the disease eventually takes their life, usually between the ages of 4 and 5.

"Throughout my life, I have been taught a variety of lessons," said Captain Rochman, "But no one had ever taught me how to raise a dying child."

The furthest Elise got was pushing herself up. She rolled, but never crawled. Laughed, but never talked. And slowly, even these seemingly small things started to disappear.

"Other than the initial diagnosis, watching them lose their skills one by one is the hardest part," said Captain Rochman.

Now 3 1/2 years old, Elise has lost the ability to vocalize, see and move. She is plagued by seizures, which have become more frequent over the past few weeks and come after nearly a year of very little disease progression.

"After being stable for so long, you almost lose sight that it's going to end," she said. "And then something like this starts. It gets harder every time."

Elise is on a handful of medications to help treat her symptoms, but even with all the recent advances in medicine, the disease is still today incurable. Her doctors claim that because of the rarity of the disease, not many researchers have been willing to put forth the time and money to find a cure.

To this, Captain Rochman asks, "How do you put a price on the life of a child?"

In order to help advance research efforts and raise awareness of the disease, the Rochman family has dedicated their time to the Cure Tay-Sachs Foundation, a non-profit organization that raises money for Tay-Sachs research.

Their goal is to raise $1 million by the end of 2008. Since last June, more than $450,000 has been raised, and a single benefit in Elise's honor this month raised $45,000.

The Rochmans also worked with Illinois Governor Rod Blagojevich to proclaim May as Tay-Sachs Awareness month throughout the state.

"It helps to be able to feel like we're doing something," said Captain Rochman. "That we're progressing toward a cure."

She acknowledges the fact that even if a cure is found it won't be done in time to save her daughter, but said they contribute so that other affected families may someday benefit from their work.

"I know that one day a parent of a child with Tay-Sachs disease will be able to say, 'thank you, because of your donations my child is alive'," she said. "And just maybe because we have raised awareness of this disease others will not have to suffer."

Another benefit of the foundation is a network of families that can help provide answers and support during this difficult time. However, Cure Tay-Sachs is by far not the only source of support for the Rochmans.

In addition to family and friends, Captain Rochman said that the amount of support her work center at the Scott Military Personnel Flight provides has been overwhelming.

"They've been very flexible with my schedule," she said. "If she gets sick it's great to be able to be home with her, because we never really know when it will be the last time."

Members of her squadron have also joined in on the awareness efforts. Ten members volunteered at Elise's benefit and the squadron booster club raised more than $500 during a bake sale to send to the National Tay-Sachs and Allied Diseases Association.

When she was first pregnant with Elise, Captain Rochman momentarily contemplated separating from the U.S. Air Force to be able to spend more time with her daughter. She admits she is now thankful she didn't.

Because of her active-duty status, all of Elise's medical care and costs have been covered. Also, the Air Force transferred the Rochmans to Scott Air Force Base from California to be closer to family and major medical centers.

"Parents can lose everything trying to take care of their children," she said. "(The Air Force) has been great for our family."

Captain Rochman's husband, Tim, is a stay at home father and is able to spend the days with Elise and her younger sister, Eden. He handles the majority of her feedings, medications and necessary stretching to help exercise her muscles.

Their daily routine also includes an hour-long jog while dad pushes both Elise and Eden in a stroller, as well as lots of love and attention.

"We cherish every moment that we have with her," the captain said. "I don't come to work every day and think my daughter is dying, because right now she's still living. All we can do is take things day by day."

And so day by day they continue, treasuring each smile they still receive from Elise and viewing life with a slightly different outlook.

"Prior to diagnosis, I think we took Elise and her health for granted," the captain said. "I wonder now how much I missed during her first year of life because I was too involved with other things. She has given us a different perspective on life, one I believe we are truly blessed to have."

To find more information about the disease, detection testing and treatment experiments, visit the Cure Tay-Sachs Foundation Web site at