Love for Lucas

Lucas Payne

Lucas Andrew Payne was born on June 8, 2012. Since his birth he has been a blessing to our family, and we are privileged that the Lord has trusted us with him. A few months after birth we noticed something was not right with some of his movements and that led us through a journey of many tests and procedures. We have met many great doctors, nurses, and others along the way who have helped us make decisions and who have been there for us as we have tried to figure out what is going on with Lucas.

In June of 2013, we traveled to Cincinnati’s Children’s Hospital (#3 children’s hospital in the United States) where they told us that Lucas has Hypomyelination which is a lack of myelin in the brain. Myelin is the insulation around the nerves in the brain, and Lucas had the myelin of a four month old at the time of the MRI in June. Hypomyelination is part of the Leukodystrophy family.

Since that time, Lucas has been tested for many different specific forms of Leukodystrophies but all have been negative. Unfortunately, about 50% of all people with a Leukodystrophy never get a specific diagnosis and are just classified as having an Unknown Leukodystrophy. Lucas is still being tested and we do hope he is one of the ones who get a specific diagnosis.

Through all of this, we have learned so much from so many…. especially Lucas. His smile will melt your heart and his chuckle is contagious. He’s a pure joy to be around (except when he’s sitting or riding in his wheelchair in the car…that’s a whole different story ) and we thank God every day for allowing him to be a part of our family. There have definitely been highs and lows, good times and bad along the way but our faith is strong and the love and support we have received from family, friends, and even strangers has been unreal.

You can follow Lucas' journey on Facebook at Love for Lucas.