inside this issue: Deep Brain Stimulation life after ... - Cook Children's

a message to our donorsDeep Brain StimulationCook Children’sis committed toimproving thehealth of everychild in ourcommunity, andyour supportprovides themeans for thatto happen.Cook Children’s Health Care System President andCEO, Rick W. Merrill.In this issue of Promise we feature anamazing success story of a child treated atCook Children’s and of the doctors who arepioneering our signature Deep Brain Stimulationprogram. This is a first for Cook Children’s thatsets us apart from other children’s hospitals.It is through procedures like these that weare helping kids like Sam lead a full andproductive life.We also are proud to be able to recognizeand honor our donors. Philanthropic gifts arevital. They allow us the opportunity to care forour youngest citizens. This is an impressive list ofindividuals and businesses that have really madea difference. Cook Children’s is committed toimproving the health of every child in ourcommunity, and your support provides themeans for that to happen.Every day we see an example of theoverwhelming spirit of giving and dedicationto children. Caring for their physical, emotionaland spiritual needs takes a combined effort.Whether it’s portraying Santa Claus, hosting anannual event like Cookies and Castles, or sayinga prayer, we are continually blessed byextraordinary displays of kindness.Thank you for your commitment toCook Children’s. Families going throughdifficult times with sick children are vulnerableand in need of our compassion, and you haveshown that in abundance.Cook Children’s wishes you and yourfamily the healthiest of new years.Air dates forthe specialwill be SaturdayDecember 13th at 6:30 p.m.with a repeat of the programon Christmas Day at 5 p.m.The nicely dressed young man gladly signedautographs for an eager audience who had justwatched his screen debut. After all, the 13-yearoldhas all the makings of a star – good looks,a quick wit and commanding presence.For those in attendance at the CookChildren’s donor appreciation dinner inSeptember, they will remember his name –Sam Gladen. Sam was the star of a documentarydescribing Cook Children’s leading-edgeDeep Brain Stimulation (DBS) program andhis battle with a rare disease known ashereditary dystonia.“Something is telling my brain that when myfoot is normal, it’s causing me pain,” Sam said.“The dystonia takes my foot and contorts it. Allit really does is cause me more pain, but thebrain doesn’t register it.”Sam gave permission for film crews fromNBC 5 and Cook Children’s, as well as theStar-Telegram, to follow him as he preparedand went through DBS surgery to treat hisdystonia. NBC 5 continues to follow Samduring his amazing recovery for a special thatwill air in December.Although he’s only 13, Sam seems destinedfor something great. He makes you laugh with adry sense of humor and a keen sense of timing.And when he speaks about all he’s been throughof late, it’s poignant and powerful.Sam’s ordeal began in March 2007.The Gladen family was walking down a streetand Sam fell down on the sidewalk becausehe said his leg went out. Sam’s parents,Debbie and Kent, thought their son was tryingto be funny.Things became worse later in the month,when Sam returned home from a mission tripon March 23, the day after his grandmotherdied. On March 29, the day of hisgrandmother’s funeral, Sam could notwalk and he needed crutches. Somethingwas legitimately wrong with the Gladen’slittle boy.Debbie and Kent looked for answers. Theyfound them, but the answers were unfortunatelywrong. He was misdiagnosed several times. TheGladens were told Sam was growing too fast,that he had problems with a tendon in his kneeand that it was psychological because of hisgrandmother’s death.The Gladens consulted with a number ofphysicians, including their family pediatrician,a podiatrist, and an orthopedic surgeon, butstill found no help for their son. To make mattersworse, Sam’s toes began to curl in and he couldnot unclench them. He remained inconstant pain.Sam went to aneurologist in Dallas.The neurologist saidit looked likedystonia, but hehad only seenone case andwas notequipped totreat Sam.Sam wastreated withBotox injectionswhich werepainful, butprovided reliefthat was at besttemporary. Hebegged thetreatment bestopped.below:Sam Gladen02cook children’s promise – the magazine of Cook Children’s Winter 2008 03