On July 22nd, 2014, my husband and I brought a beautiful baby girl into this world. When Kamilla came into this world, she was silent and unlike any child I have seen born, there were no tears, no screams– just a perfectly quiet little blessing. We had no idea at the time that her silence would go on for years, and not only did we have a baby that never cried, but we had silence from all the doctors, as no one could give us any answers.
Fortunately for Kamilla, her smile speaks a million words, and she touches lives everyday with this infectious smile. When Kamilla was two months, she was diagnosed with two holes in her heart which the cardiologist watched closely until they closed and then discharged us and told us we would never have to see him again.
At 18 months Kamilla, was diagnosed with Hypertrophic Obstructive Cardiomyopathy and had open heart surgery when she was almost two years old. Due to some oversight by the medical team 24-hours after her surgery, Kamilla’s heart stopped, and my husband and I stood there begging God not to take our precious baby while the team rushed in and worked on Kamilla; this resulted in a second emergency surgery at the bedside.
For the first two years of her life, we were admitted to the hospital roughly every three months for respiratory distress. During all this time, Kamilla was not developing the same as other children. She wasn’t crawling or walking the way other children her age were. She wasn’t babbling and saying all those first words parents long to hear. Her physicians re-assured us all her developmental delays were related to her heart disease. We were uneasy but had to trust the physicians.
Kamilla was full of love and kisses and giggles. When Kamilla was three, we transferred her care to Dallas Children’s Medical Center. We had had one too many bad experiences at the local Children’s hospital, and from that point forward, we started finding answers.
After Kamilla met a geneticist and had three rounds of extensive genetic testing, we finally had an answer. As the Geneticists read the definition of Ogden Syndrome from a sheet of paper, because he too had never heard of the disease, we knew we were in for a long journey full of no answers.
From the time she could sit up in the grocery store shopping cart, Kamilla has been touching strangers’ lives. Strangers would come from across the store just to touch her and see her smile up close. Often, they would pick her up, hug her, and tell us how she had made their day. This little girl has the strength and power of God within her, for certain, and knows exactly who needs Kamilla loving when she meets them.
When Kamilla was five, she was diagnosed with Mitral Valve Stenosis and after medically managing it for a couple years, she recently underwent a mitral valve replacement, and in true Kamilla fashion, she hit every road bump post-operatively. Kamilla went into liver failure, kidney failure, and was not responding.
Again, my husband and I found ourselves praying that God’s Will be done and praying even harder that His Will was to let us keep our precious rare girl. With a prayer circle that reached many states and countries, God heard our prayers and in three weeks, Kamilla was home and running from window to window to greet the neighbors.
Kamilla is blessed with two sisters who love her to no end. Kinzley, who is 10, and Evelyn, who is 3, and she could not wait to get home to see them.
She now has nine specialists and three therapists that we visit. She is continuing to grow and develop at her own pace and is working with her therapists on a communication device so that she can put into words her wants and needs. Kamilla has a list of medications and diagnosis that take up page after page, and she continues to fight through them day in and day out.
Kamilla gets to go to school, which she absolutely loves, and there she has a second set of therapists who are on her team. She amazes us every day with her strength and determination, especially if she knows her end goal is to get a popsicle or to give someone a hug!