0 My cousin - Seth - 0 xD

I always love making new discoveries, (usually bands and musical talent on the internet) but this week I made the best discovery. I have a precious little cousin named Seth Gilley. Seth's grandfather is my grandma's first cousin. Everyone has a distant relative that they meet at one time or another. Why am I writing about Seth? This precious little 5 year old has Spinal Muscular Atrophy, type 2. He is the cutest little guy and he and his family are going through so much. They celebrate every little moment with him and his sunny attitude is an inspiration to everyone around him. Seth has to undergo expensive treatments to manage his condition. They do a fundraiser walk called Seth's Walk each year in Stephenville, Texas. If you are in the area stop by play some games, eat some food and walk to help Seth. If you are not near Stephenville, you can send a message to him or his sister Caroline by logging onto their Caring Bridge. (We have not yet met personally, they do not have my direct contact information and they are going through so much) please just write an encouraging message for them if you write. If you would like to donate to help them out with very expensive treatments go here. Every gift is significant and will help Seth's precious family. Tell your friends, if everyone just gives a little we can help the family meet their goal to help Seth. If you are under 18 please ask your parents. If you would like to donate to Seth's Walk under the 4th Annual Cure MSA: Run-Walk-N-Roll (love the name) program click HERE. We can make a difference!
Here is Seth's Story:
Seth Michael Gilley was born on June 13, 2006. He was perfect from head to toe. He had long fingers like his momma, and a crooked ear like his daddy. He was welcomed home by big sis, Caroline.

She loved him instantly and dreamed of the day he could play with her.

Seth developed normally until 8 months of age, when he began losing some gross motor abilities such as sitting up or rolling over. On March 30, 2007, we were told that Seth would never be able to crawl or walk because he was being diagnosed with Spinal Muscular Atrophy, Type II. That was the worst day of our lives.
It was on our way home that day; that we knew God was present. He reminded us of the meaning of Seth's name: "the chosen one". Despite our emotions, deep down we knew that God had a plan for our family and for Seth, and that He would see us through this.

Since then, we have experienced fear, anger, sadness, confusion, happiness, pride and many more emotions. Our simple life of work, church, family and friends has transformed into a balancing act of school, doctor appointment s, therapies, trips to Utah, medications, insurance battles, wheelchairs, standing frames, respiratory equipment, research and orthotics, on top of the normal simple life. However, it is this life that we have come to accept and be thankful for.

Seth is now 4 years old and will be 5 on June 13th. He is so happy, so funny, and has the biggest heart I’ve ever known. You may often see Seth either cruising in his power wheelchair around town, or in his Lightning McQueen power wheels car in our front yard. He uses his manual wheelchair in the house and at pre-school to keep his arms as active as possible and to maneuver through tight spaces.

A week in the life of Seth typically includes 2 half days of KinderCare preschool at Graham St. Church of Christ, playing t-ball on the All Stars team each Tuesday night, riding horse-back at the TREAT program at Tarleton on Wednesdays, swimming at Tarleton with swim teacher, Mrs. Margie on Mondays, getting physical therapy each Wednesday from Mr. Wayne at our house, and then every other Friday, he gets physical therapy at Cook’s in Ft. Worth from Mrs. Stephanie. Besides all of that, he is a great co-pilot as I run Caroline to soccer and piano and whatever else may come up. And if that is not enough, Seth must wear his back brace a minimum of 8 hours a day. With each growth spurt, Seth’s scoliosis curves more and more. The back brace and potentially a nighttime corrective back brace in the near future are attempts to prolong back surgery as long as possible. We strive for at least 2 hours of standing a day, whether it is in his mobile stander or in his KidWalk. And last but not nearly least, it is our goal this Spring/Summer to get Seth potty trained. He requires a special seat to hold him on the potty, but uses the potty really well when we take him. However, most often he prefers to not waste his time using the potty. He just wants his diaper changed so he can get back to the important things in life..PLAY!

Which brings us to his wild imagination. He loves to dress up like Spiderman, or a pirate, or football player, or cowboy, a dinosaur, a policeman, or a fireman. He is really animated with his toys, acting out various scenarios. His other quirk, if that is what I should call it, is his obsessive need to hold every toy that is starring in the movie he is currently watching. For instance, if he is watching Toy Story (one of his favorites), he wants to be holding Woody, Buzz Lightyear, Rex, Ham, and any others that he can get his hands on. So obviously, this keeps us running constantly after the toys he wants.

I couldn’t have said this a year ago, but now I can honestly say Seth “talks our ears off”! He puts his sister to shame and barely lets her get a story in at the dinner table. Lately he is quoting lines of his favorite movies. For example, he has recently said “holy nuts” from Alvin and the chipmunks. And is still singing “All the Single Ladies” on cue! Scary, I know!

He is also a typical little boy in that he loves to play in the dirt or mud, thinks burps and toots are the funniest things in the world, and loves to tackle and pick on his sister! Seth continues to amaze us each and every day with his happy, tough, and easy-going attitude. God has blessed us wonderfully with two wonderful kids, good jobs, wonderful family and friends, and a loving church family. Having a child with special needs is not what we had planned for our life, but we can honestly say our life is better and more fulfilled than we could have ever imagined.







Love,
Debbs.