Welcome!! We appreciate you taking an interest in our Krusade to increase awareness and support for Arthrogryposis and other less-publicized physical disabilities. We invite you to embark on Kya’s journey and share your family’s insight and experiences. We also encourage you to gain and share knowledge about physical disabilities, the resources currently available, interact in a supportive environment with other individuals and families affected by Arthrogryposis and other physical disabilities, 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 confirm the gender of our 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 cyst 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 doctors 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.
Half an hour after Kya was born, I was handed a crooked photocopy of pages from an outdated medical journal. The top page of the packet read: Arthrogryposis Multiplex Congenita. This impersonal gesture and having just seen my daughter rushed off to the Neo-natal Intensive Care Unit was devastating. 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’s arms, wrists, hands, ankles and feet are affected by Arthrogryposis. Her hips were bilaterally dislocated at birth and she has scoliosis. After several exhaustive searches to find information about Kya’s condition and potential resources, we decided to turn the circumstances into something positive and proactive. Her Godmother and I created Kya’s Krusade. We wanted to ensure that other children and families had a place to turn to for support and resource information.
Kya, now four, has had 14 surgeries and attends physical and occupational therapy weekly. She is unable to walk without support to help maintain her balance. One of our big challenges is comforting Kya through her frustrations. She is very aware of her surroundings and her limitations. There are 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! She is very intelligent and determined and does not let her condition limit her in any way.
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 and other physical disabilities. Welcome to the Kya’s Krusade community. We hope that you gain a greater awareness of our purpose, principals and Krusade!
Kya’s Krusade is a comprehensive resource center, serving children and families affected by physical disabilities, specializing in Arthrogryposis and other less publicized physical disabilities. We offer education and assistance for children from diagnosis through 18 years of age. We strive to form a diverse community network and provide opportunities to enable equal access to all available informational, emotional, medical and financial sources of support