Kallista

Name: Kallista Ann Thompson

Location: Puyallup, Washington State, USA

Form of EB: Simplex-Dowling Meara

Birthdate: August 27, 1999

Lives With: Mom Linnet, Dad Jeremy, and big brother Jerome, who is 3 years old and EB free.

More About Kallista:

Our little angel Kallista was born on August 27th of 1999. She was born at our midwives birthing center on Lake Tapps in Washington State. The labor and delivery went as smoothly as we could ask for. There had been no indications that Kallista should have had any problems after birth, and after delivery she appeared to be very healthy except for raw areas on her hands and feet.
Our midwife had never seen anything like it before so she sent us directly to a doctor she knew. The doctor took a look at Kallista and then after a while came back and told us that she thought it looked like a disease called Epidermolysis Bullosa. She had never seen it before but the symptoms looked to match those in the medical reference she was using.
Kallista was born on a Friday and we had planned to wait until Monday to take her to a dermatologist, however on Saturday morning she developed several very large blisters around her diaper area. We rushed her to Children’s Hospital in Seattle and spent the next week waiting to find out how severe her condition was.

Luckily for us there were some wonderful people at Children’s hospital and a doctor who was somewhat of an expert on EBS-DM. While the results of the Electron Microscopy were not in yet, the preliminary diagnosis was that it was Simplex Dowling-Meara and the doctor suggested that we could best care for Kallista by taking her home.
By now we had learned how to spell and pronounce the disorder and it was time to learn the details of the disorder.
After several weeks at home we got a call from the dermatologist in Seattle. He told us that the Electron Microscopy had confirmed that Kallista had Simplex Dowling-Meara.

Because there is no known family history of EB it appears that Kallista’s is the result of a random gene mutation.

The first couple of months were a bit rough for Kallista. It seemed that if it was not one thing going wrong it was another. Weight gain was going a bit slower than we would have liked, and she had several bouts with the common cold. She was also having some problems with acid reflux and her nose had developed some EB related blockage, which was making it difficult for her to breathe, especially while feeding.

Back in October I had contacted several local TV stations to try and get them to take interests in EB awareness week and in the beginning of November the local ABC affiliate aired a special report on EB. The report was several minutes long and featured Kallista at home as well as at a doctors appointment.

Kallista has been doing very well over the last half year, while weight gain continues to be slow her health has been very stable. Kallista has been a breastfed baby since the beginning, although it was quite a task at first she has been eating like a champ since the first month. Now she eats 3 meals a day in addition to the breast milk. We have recently had a physical therapist helping Kallista develop her fine motor skills, which have been slow to develop due to her hands and feet being the most affected areas on her body. Our regimen of physical therapy seems to be helping Kallista develop her muscles and dexterity. Kallista has developed a wonderful personality, in spite of her difficulties she is a very smiley, happy baby. Now that she has made it through the first year we look forward to seeing her continue to improve throughout her second year of life.

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