How Fast Life Changes

Making tomorrow brighter for children with motor disabilities.

Flash back to 1993: I am a proud Mom enjoying life with my husband and our daughter Nicole Marie, then age 9 and about to become a big sister.

Everything changes following the birth of Nicole’s little sister, Jenny Rose. Weighing in at eight pounds, 11 ounces, Jenny returned home with us in two days. Ill fortune struck when Jenny was 15 days old and became sick with a fever, turning a blue-gray color, looking limp and totally lethargic. We called the doctor, who said to rush Jenny to St. Joe’s Children’s Hospital immediately.

Doctors performed a spinal tap on Jenny right away. Jenny was diagnosed with Strep B meningitis.

My mind races. What is that? Where did it come from? Will Jenny be alright? Confusion continues and everything becomes a blur. Jenny starts having seizures, and the pain becomes unbearable for her. She cries and cries. We can’t even touch her.

Jenny was baptized twice during her hospital stay. After 31 days in the pediatric intensive care unit, the time came to bring Jenny home. How were we going to do this? Doctors, nurses, therapists, home health aides— all these strangers became essential people in our family’s new life.

1995: Time flies in a whirlwind. Though two and a half years pass, I still don’t know how to help Jenny. Perhaps the frenetic feelings of helplessness stem from the fact that Jenny was still spending more than half of her days in a hospital bed. We still couldn’t control the seizures. We’ve tried six medications at this point, but nothing alleviates Jenny’s condition. Nothing until we travel thousands of miles to give Jenny another shot at life. A new way to breathe.

One night, while watching the news, I see this story on a Ketogenic diet that claims to control seizures. A flood of new questions. Then comes the anger. This high-fat diet supposedly somewhat puts the part of the brain that is seizing to sleep. Why didn’t my family know about this? I feel like a failure. I shove my feelings of helplessness aside and put Jenny on the Ketogenic diet. She is seizure-free within a couple of days! She gets off of three seizure medications within months. Hope lies ahead.

I kept Jenny on this diet for two years, and it worked. However, today our family continues to exist in this life I know little to nothing about. Doctors and nurses, as well as physical, occupational and speech therapists, flee in and out of our house all of the time. Jenny remains hypotonic, meaning she appears low-toned and floppy. She can’t even sit up. She is unaware of her surroundings. This can’t be it. Jenny is in there somewhere.

Where? When Jenny turns 5 years old, I learn about an intense therapy program in Poland for kids with motor disabilities. If that’s where I may find help for Jenny, I’ll go. But during a fundraiser, another parent with a special needs child takes me aside. How will Jenny learn to walk, this parent asks, if her brain cannot learn? Again, I am clueless. This parent then tells me about Hyperbaric Oxygen Therapy (HBOT), a treatment where patients receive oxygen in a pressurized chamber and potentially grow brain cells. The treatment is offered in Canada.

I get home and search the Internet. Forget about Poland. We are going to Canada, where Jenny will get oxygen.

We spend one month in Canada. While people generally breathe at 21 percent, Hyperbaric Oxygen Therapy delivers 100 percent oxygen, enabling people with autism, Down syndrome, Cerebral Palsy and other neurological deficits— people like Jenny— to get oxygen to parts of the brain that were deprived of it at some point. New brain cells can then begin to grow and the neurons can get reorganized.

Similar to most patients, Jenny’s first discernible improvements from receiving HBOT were increased verbalization and improved eye contact and bowel movements. Jenny’s tantrums decreased and she became more aware of her surroundings.

Soon, Jenny interacts with us— and she knows who I am! She learns how to sit and can play with a toy. She smiles. Now I know she is with us. How can we help Jenny more?

I learn about Conductive Education (CE). The intensive therapy originated in Budapest, Hungary, and the teachers are known as conductors. Conductors are trained to treat a child as a whole, not just his or her symptoms. CE shows children with motor disabilities how to use their bodies through repetition. Still age 5, Jenny starts Conductive Education— and this time, the therapy takes place close to home. Jenny fought everyone during the first couple of days of CE. Many children do the same. Within two weeks, however, Jenny was out of her braces up to her hips. She was following directions by performing the tasks being asked of her. And by age 8, Jenny no longer needed her leg braces, wheelchair or walker.

The theory behind CE is: Children learn how to use their bodies when a goal is broken down into simple tasks. Conductors and those leading CE practices, including parents, train kids with special needs in this way. There are many positive aspects of CE— for the entire family. Teaching things in bits and pieces leads to a more independent lifestyle for family members, and the sense of pride that comes with that is priceless.

Now 14 years old, Jenny is a very happy child. I continue to explore every option to help her. The struggle and search doesn’t end. Yet, now I know how and why my life changed. I was meant to learn in order to teach other families what I had learned. For the past three years, in order to help children everywhere, my life has been to bring together in one place the therapies that helped Jenny.

I became trained in Hyperbaric medicine and hired conductors, and the Jenny Rose Center was established in April 2004. Both therapies are available in the Pennsylvania facility, where parents come from across the country to give treatments to their children and to try to make a vacation for their family during the treatment period in the Pocono Mountains. Fourteen years of change, and my life is still changing.

If you know someone with special needs who could potentially have a better quality of life, help them now by spreading the word about these innovative treatments.

To learn more about Hyperbaric Oxygen Therapy, Conductive Education and other services at the Jenny Rose Center, visit www.thejennyrosecenter.com.