Hardships often prepare ordinary people for an extraordinary destiny...C.S. Lewis. Those of you that know our baby brother, Garrett Lucas, you know that he is already an extraordinary little boy. He has been through more in his short 9 years than most do in a lifetime and he does so always with a smile on his face.
Garrett has not only one rare disease that he has been battling since he was about 2, but 2 rare diseases. We have been traveling to specialists in Denver, Omaha and Dallas seeking answers for his Perthes Disease. Leg-Calve-Perthes Disease is a degenerative disease of the hips in children. Unfortunately, our family is all too familiar with Perthes as Baileigh also has this rare disease and has had 3 hip surgeries as a result. He has spent time in and out of a wheelchair and has had his normal boyhood activities limited. An hour or two of running and playing like a normal child would result in tears of pain the following days. It breaks our heart to hear him say constantly, "I just want to be a normal boy."
Last summer Garrett was diagnosed with an even more rare disease unrelated to his Perthes called Klippel Feil Syndrome. Most physicians have never even heard of KFS let alone treated a child with it. It affects about 1 in 43,000 people. Our parents have spent the last 9 months traveling to St. Louis, Boston and Omaha seeing specialists to come up with a plan to fix Garrett's spine. We have found out that every level of Garrett's cervical spine, the base of his skull and also, T1, T2 and T3 are abnormal causing deformities.
As of this moment Garrett is at Children's Hospital in Omaha recovering from a surgery that doctors in Boston and Omaha collaborated together as the best option for the lower portion of his deformities. He is a trooper and smiling as always. He is proud to tell you now that he is made of titanium!
Garrett will continue to have care for his Klippel Feil throughout his lifetime as it is a disease that can effect multi systems in the body, not to mention close monitoring of his spine. He will also be continuing with his Perthes Disease treatment in Dallas after recovery from surgery this summer.
We have hesitated to do this for our parents for months now, as they are proud people, but as many of you know they are always there to help anyone whenever it is needed. My stepdad is always there to help a person in need, so I decided it was time to try to help them out and Garrett Lucas!