Courtney Jo Rutherford was born September 25, 1996. She is a beautiful baby girl and everything seemed to be just fine. She came home from the hospital just 23 hours after her birth. About the first month of Courtney's life everything seemed perfect, then she started vomiting her formula. The usual was suspected- change her formula and see how she does, this scenario lasted until she was 8 months old.

When Courtney was about 2 & 1/2 months old, I noticed that she didn't move as much as I thought she should. I spoke with her pediatrician about my concern and was told to let her develop at her own pace. Do not compare her to her sister, I was told, Brett is very advanced for her age.

When Courtney was 4 months old I told the doctor again that she didn't move her legs much and when you would lay her down she stayed in the same position that you put her in. However, she did fix and follow you with her eyes, respond to voices, smile and coo.

The pediatrician and myself agreed that Courtney needed to be seen by a neurologist. After several tests the neurologists suspected cerebral palsy. Something we were not thrilled with but would learn about and deal with, as we needed.

After we switched pediatricians we found out that the neurologist that Courtney was seeing did not specialize in Pediatric Neurology, so a referral was made to the Neurology Department at Children's Hospital of Pittsburgh (CHP). Before it was time for Courtney's scheduled appointment, she developed noticeable seizures and was rushed to CHP where she was admitted for 8 days and had a series of tests done. She had an MRI, an EEG, and so much blood work that it was unbelievable. At this point it was believed that a portion of Courtney's brain did not develop. It was told to us that she would be capable of learning but she would be very slow. Again this was something that we could live with, Courtney would require a lot of time, patience, love, and understanding which is nothing more than being a parent. We accepted this and after Courtney's seizures were controlled and her Phenobarbital level was okay, we took her home. By this point Courtney was 5 1/2 months of age and had lost her smile and her coo- they never returned.

At 6 1/2 months of age Courtney was taken to the emergency room because she could not be awakened. Her discharge sheet said her diagnosis was "Krabbes Disease/Mucopolysaccharide Disorder". When I checked with her neurologist about this diagnosis, he told me that those test results were not back yet and that diagnosis should have never been made. None the less, we researched this disease only to find out that Krabbe's was horrible, and we had no proof that this is what Courtney had. So not wanting to face the fact she may have Krabbe's, we didn't!

When Courtney was 9 months old she had another MRI which revealed that her brain had deteriorated. This was the worst news that we could have received. We still didn't know exactly what she had, but we knew that it would, in a short period of time, take her life. At this time we also found out that Courtney was aspirating her food and she had a GJ Tube placed. The tube was a relief because it was taking 45 minutes to an hour to feed her a 4-ounce bottle. The news about the MRI took its toll on the entire family. The reality of "Krabbe's" was settling in on everyone.

Courtney had a skin biopsy, 2 MRI's, 2 EEG's, 2 spinal taps, and enough blood drawn to satisfy Transylvania, but no diagnosis. This was probably the most frustrating part of Courtney's life, knowing she was terminal, but not knowing a name to put with her illness.

We suspected Krabbe's after doing research on it ourselves, but had no proof until 10 months later. Finally, when Courtney was 20 months old, we had a name for her illness, at last an answer. Courtney has suffered from pneumonia a number of times, ear infections, increase in seizures, and medication adjustments. She has put up a long hard fight and you can see that she is getting very tired. Courtney is 2 1/2 years old now and just as beautiful as she can be. She is on 3 different seizure medication, reflux medication, Cromolyn for respiratory maintenance and Robinul to decrease the amount of secretions she produces. Courtney maintains her weight between 20-22 lbs. She requires Senakot in her formula to keep her bowels moving. Along with her feeding tube she has a suction machine, an apnea monitor, a pulse-oximeter, and an oxygen compressor.

She still knew when there is somebody beside her, when you talked to her, she heard you. Although I didn't believe that she could see anymore, sometimes she responded to light and sometimes she didn't. Her sister could always get a reaction out of her. She loved the water, just don't wash her, and sometimes she liked to be held and other times she liked to be left alone. She was our special little angel and we will treasure her always. It was hard seeing her struggle and knowing you can't help. We prayed for her comfort and peacefulness. And without God, this whole situation would have been intolerable. We thank God everyday for Courtney and her sister and each other-through Christ all things are possible.

Courtney Jo earned her wings on April 23, 2000.

For questions or comments, please email us at . This is Courtney's grandmothers web address. She or I will answer your questions as soon as possible, be patient, you will get a response.

Thank you,

The Rutherford's

(Pam, Jesse, Brett, Courtney)



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