About

Dear Visitors,

Welcome!! We appreciate you taking an interest in our “Krusade” to increase awareness and support for Arthrogryposis. We invite you to embark on Kya’s journey and share your experiences as well. We also encourage you to gain and share knowledge about Arthrogryposis, the resources currently available, interact in a supportive environment with other individuals and families affected by Arthrogryposis, and learn about the ways that you can contribute to our cause.

Our story began when I was seven months pregnant. Anxious to complete our nursery, we wanted to verify the gender of the baby. This was my first pregnancy. It was routine and all of my check-ups went well. The day of the sonogram was a beautiful summer day. We were excited to see the baby move and hear the heartbeat. All of that changed in an instant. The doctor located a cist on the baby’s umbilical cord. We were immediately rushed to the hospital for a more detailed sonogram. It showed that our baby girl had bilateral clubbing. There was no way to determine her condition in-utero, but we were told the outlook was grim.

Desperate for answers, we gave our permission for blood work and an amniocentesis. The amniocentesis was very risky since I was so far into the pregnancy. Immediately after the procedures, I started having contractions. Fortunately, I was already at the hospital and my O.B. was with me through every step. The contractions were stopped and I was told the best plan of action would be to remain on bed rest, until the baby arrived. As the rest of the results came in, the tests confirmed all of the conditions she did not have. With all of the test results coming back negative, I convinced myself that my daughter’s condition couldn’t be anything serious. However, the doctor’s were realistic and advised, with the severity of the baby’s contractures, she might live 4 days or as long as a month. Devastated, I remained on bed rest until the day Kya was born.

The day she was born, my O.B. arranged for members of the neo-natal unit to be present. Once she was born she was whisked away to the Neo-natal Intensive Care Unit. Half an hour after Kya was born, I was handed a crooked photocopy of pages from a medical journal. The top page of the packet read: Arthrogryposis. That was my introduction to the condition and everyday since has been a learning experience.

While Kya was in the N.I.C.U., we had consultations with orthopedic surgeons, medical specialists, and physical therapists. We were told that Kya would have limited use of her limbs, but she would be of above normal intelligence. It was suggested to place her in a wheelchair as she grew older and to steer her towards a computer based occupation. It was in that moment, with the support of my family and friends, that I became determined to ensure that she would live an independent life, despite her handicap.

Kya is very outgoing, intelligent, and determined. She attends school four days a week. Currently, she is only able to stand and take steps with the aide of a gait trainer. Our latest challenge is comforting Kya through her frustrations. She is very aware of her surroundings and her limitations. There are many times throughout the day when she cries out of frustration, because she is unable to play, eat, or interact like other children. She continues to strive to do things independently!

Kya’s story is unique, however it is not uncommon. Although we may never meet every family living with Arthrogryposis, they have our support. We will always be united in our “Krusade” to conquer the challenges brought about by Arthrogryposis.

On behalf of Kya’s Krusade, thank you for your support!

Sincerely,
Kya’s Mom