IMG_20110804_150613Noah (age 12), tows, pedals, and pushes his brother (age 10) who suffers from a rare neurological condition in triathlons.  Just because a child has a life-limiting illness does not mean they have to sit on the sidelines! The brothers love to compete in races and triathlons!  Noah loves his brother  Lucas and wants him to experience life to the fullest!  In an interview, Noah was asked by a reporter what he would like the world to know about Lucas.  His response was wise beyond his years:   “I like everything about him. He’s perfect.”

Lucas was born on October 2007. For the first two months of life, he progressed like any other child.  A few months after he was born, he started exhibiting peculiar behaviors. He would cry constantly and arch his back and neck in unusual ways for a baby. At first we chalked it up to colic, but we suspected something else.  He had a series of tests and finally we decided to do a MRI to rule out anything neurological.  The test results revealed that Lucas has a rare genetic neurological condition called Lissencephaly.  During development, many of his brain cells didn’t migrate to the correct place and much of his brain is significantly affected. He has severely impaired motor skills (can’t sit, stand, walk or roll-over), he is non-verbal, and is fed by a g-tube.  He is at a high risk of having seizures and pneumonia in the future.  There is no cure for Lucas’s condition and he is expected to have a significantly shortened lifespan.

In his short life, he’s been on an airplane, boat, snowmobile, 4-wheeler, alpine skiing, surfing, horseback riding, among others.   He was given the trip of a lifetime to Disney World in Florida courtesy of Make-A-Wish.  Lucas competes in triathlons with the help of his older brother Noah. He thoroughly enjoys going out in the community and being with people.  His smile is infectious and leaves a permanent impression with everyone he meets.

Lucas is such a wonderful and happy boy. He teaches us new things every day. Lucas teaches us to cherish each day and make the most of life.