Clinical definition: Lissencephaly, literally meaning smooth brain, is a rare genetic brain malformation. Kids with Lissencephaly usually have significant developmental delays, seizure disorders, spasticity (stiff muscles), hypotonia (floppy muscles), difficulty swallowing, aspiration, and respiratory issues. Although there is a wide spectrum and some children have a near normal development level, most cases are moderate to severe. Life expectancy varies, depending on who you talk to, used to be 3 months to about two years. However, with advancements in seizure control medicines and medical care the age has increased from about 8-20 years. There have been some cases where people with Lissencephaly live to their fourth and fifth decade. The most common complications are seizures, aspiration, choking, and respiratory infections.
Pretty bleak, huh? We’ve learned not to Google anything because all you’ll read is information that gives a very grim outlook with next to zero hope. Obviously, when we got this diagnosis we were completely devastated. It was easily the worst day of our lives. We were told that Paige has a severe form and to not really expect much from her physically and mentally. That’s an awfully dark prediction that we just refuse to believe. Kick in the gut? Try being ran over by a bus.
What it means to us: We believe that Paige is a beautiful little girl that won’t be limited by a diagnosis. We believe that every time she does something that a doctor told us would never happen will be the happiest days of our lives. We know that she was given to us for a reason and truly, truly believe that she will only enrich our lives and everyone around her. We believe that she has potential and we will make it our life’s work to make sure she has the happiest and most fulfilling childhood. We believe that even though our lives are now very different, they will still be good and we will not waste energy being sad all of the time. Bottom line: Paige will be loved, cherished, and celebrated every day and is a huge blessing through and through!