Danny and I told our families we were pregnant last Christmas. We were nervous and excited and all the usual things. In early January, we went to our first OB appointment where we found out we were having twins. I thought that was the most surprised I would ever be in my life. At that same time I had a bout of the flu (or so I thought) that made me pretty miserable for a few days, but other than that I had what most would call an easy pregnancy. On July 30, 2013 my sweet babies were born and my husband and I had never experienced such joy. After one perfect week together, we found out about the complications and trials we would face for the rest of our lives.
Sophie & Lincoln were diagnosed with congenital CMV in August 2013, just a month after birth. Like most pregnant women, I had never heard of CMV. Danny and I never would have had the twins tested for CMV had Sophie not displayed hearing loss at the hospital. After testing positive, we spent a few days with specialists at Primary Children’s and the effects of the disease became apparent.
Lincoln’s brain scan revealed a cyst on his brain that puts him at high risk for learning disabilities such as dyslexia, ADHD, and Autism to name just a few. Untreated, as most CMV children are, Lincoln was also at high risk to lose his hearing and eyesight.
The disease had more profound effects on Sophie. CMV caused a brain disorder called PMG, that left her with severe developmental delays in speech, motor and cognitive areas. This brain disorder also makes her a high-risk candidate for seizure disorders. She was also born deaf in her right ear.
CMV is a degenerative disease that often goes untreated because many babies show no symptoms at birth. Sophie and Lincoln are two, mild cases of congenital CMV and were lucky enough to be diagnosed and put on an anti-viral that prevented further damage. The anti-viral is not a cure for CMV and it cannot reverse any effects of the disease. The treatment also comes at a steep price as it is still experimental; we don't know what the long term effects will be but cancer and infertility are the greatest risks. It is a choice that no parent should have to make.
Our family's experience with CMV has been beautiful and devastating and life changing. We consider it such a miracle to have found out the twins diagnosis just a month after birth so we could get them medical treatment and developmental help right away. Many families are not so lucky. We hope our family’s story can prevent other families from experiencing the same debilitating effects of this disease.
This 5K is unlike anything our family has ever done before, but our experience with CMV has pushed us to step outside of our comfort zone and reach out to others. We hope to make a small contribution to the fight against CMV whether that be a small donation towards research, or just raising awareness in a community we love.
CMV is a disease that there CAN be a cure for, it only lacks awareness and action. Please join us in this fight!
Read more about our family here.
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