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.
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.
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.
Send e-mail to Kallista's Mommy
You've got a friend in me from Toy Story