Kyla was born August 19, 1985 in Kindersley, Saskatchewan. We knew we were having a girl as due to “my age”, I had to have an amniocistis. This test showed that there was nothing genetically wrong with our baby, and confirmed we were having a girl. After two boys, we were elated.
Right after Kyla was born, I noticed right away that her left eye was much smaller than her right eye. The attending doctor said not to worry as he thought she just had a lazy eye. So of course, we just left it at that and treated Kyla like any normal child. After her first needle in November 1985, Kyla started to have jerky movements. We were unsure of what was happening and when Kyla saw the doctor in December 1985 and repeated these jerky movements, he sent us immediately to the Royal University Hospital in Saskatoon for further testing.
It was on New Year’s Eve 1985 when we got the final diagnosis of Aicardi Syndrome. At the time of her diagnosis, she was one of 17 cases that had been identified in the world. Her MRI showed that she had her corpus cholosum but was missing part of her right cerebellum. She also showed bone a defect in her ankles and her right leg does not have a proper fit in her hip socket. We were told that Kyla would be delayed in her physical and mental development and that her prognosis was not great. They gave her a life span of 19 years of age and that her demise would be caused by a seizure. We were overwhelmed with this news and very devastated with the outcome.
We were introduced almost immediately with the co-ordinator of the Early Childhood Intervention program set up for these special children. With this program, they would teach Kyla how to do the things that we take for granted. Again, they thought she would not go far, but as time went on, Kyla did more than they had ever expected.
Because of Kyla’s seizures, she was put on ACTH in the hospital, and then we had to learn how to give her needles until she was weaned off this medication. That was the hardest thing we ever had to do.
By Feb 1986, Kyla was almost seizure free, however, something else occurred in her life. Kyla was diagnosed with Hemolytic Uremic Syndrome (both her kidneys had shut down) and she was put on dialysis and placed in intensive care. For three months, I was in the city by 7am on the weekends and worked 12-hour shifts taking care of her. Some weekends it was for two days, and alternate weekends for three days. By her third month, a miracle happened. She started to pass urine again. The doctors were amazed that her kidneys started to function again, as normally once they cease to function, they don’t come back. They increased her intake, and Kyla vomited from the excessive amount they were feeding her. So I took a month’s leave of absence and got her to slowly feed properly again without getting sick.
We were given very grim news that Kyla would never amount to anything and would not be able to do very much. I almost laugh in that doctor’s face when he sees how Kyla does communicate and what she has been able to accomplish. Love goes a very long way when these children learn to develop.
Kyla was placed in preschool at age 3 and entered the school system at age 5. She was part of the Special Education class and they had a program that was made to fit her needs. We have had our ups and downs fighting with the school system over her needs, and we had two teachers replaced in the past couple of years due to their actions with Kyla. Last year we had a wonderful teacher that got the ball rolling for her which was the best we have ever seen. At the age of 17, Kyla was sent over to the high school. We were not too sure how she would handle this, but apparently she just loves it. She is the only child in school who can legitimately sleep in school and get away with it. She has touched the hearts of the many people in the system that her helped with her care.
As we both work full time, we have used the home care system to feed her at school and watch her until we come home at night. Kyla has been exposed to ball games, hockey games, shopping, travelling, camping and music. When she smiles or laughs at the right time, you have to love her even more. She has a great sense of humor and can rile her brothers (Jason age 24 and Devin age 22) just like any sibling would do.
Kyla is almost seizure free (or at least in I control with lamictal and epival). She gets startled and it seems like she is going into a seizure (infantile spasm), however, we have been able to talk her out of some seizures. This is a trick that just came to us.
Remember that love and encouragement goes a long way when dealing with the trials and tribulations that occur during the growing years with Aicardi Syndrome.
Gerald and Karon Parker-parents to Kyla Parker 17 years old.
Update on August 12, 2005
*Kyla moved into the group home in Wilkie, Saskatchewan (1.5 hour drive north of Kindersley) when an opening became available. She took the transition very well. In the fall, Kyla attended the Wilkie High School and had a wonderful time. The teacher aide she had was just wonderful. She would take her to mass at the Catholic school to hear the music and interact with the other children. In the high school, she got to go for lots of walks when the weather was nice, hang around with the students at lunch time, and enjoyed watching the sports played at the school. She was even invited to her first school dance ever, but of course, was not able to attend. It was wonderful that they thought of her. Kyla also had a normal "school girl crush" on the cutest boy in school. Everytime they passed by him, she would giggle like a normal girl would when she saw her favourite boy. She even had favourite teachers. The teacher aide also sent us e-mails from Kyla every Wednesday, and it made us feel that they came from Kyla herself, as she had captured Kyla's spirit. Hopefully this will continue with her new teacher aide this fall. Kyla was also able to attend Camp Easter Seal this year for the very first time, and had a wonderful time. Her counsellor at the camp even cried when Kyla left for home. I am sure next year will be even better.
We have brought Kyla home for as many holidays that we could, and still pick her up for her camping trips in the summer. Kyla, as I said before, has accepted her transition very remarkably, and she has the greatest group of caregivers taking care of her. This first year has been very hard for us as parents, however, we had to learn to trust and have faith in others to take care of our little girl. Now we can see that Kyla has grown up very much, and she needed the time away from us as we did to give us a chance to have time for ourselves. She has not forgotten us or her brothers, and every moment we have with her is a treasure to be had, and is always full of happiness and enjoyment. We are no longer stressed out trying to get care for Kyla at lunch and after school and on holidays are gone, as the group home takes care of all of that. We are still Kyla's legal guardians, and then have to check with us before they do things with her that are outside of the home. All in all, as you can tell in her pictures, she is doing GREAT!!.
09-21-2008
