This is Gracen Sanders. He was born on February 12, 2009. His story actually starts months before he was born.
Jimmy Sanders and Misty Sanders got married on November 4, 1989. Hannah Sanders was born on May 29, 1995 and she was an only child for 13 years until Gracen came along. When her parents found out they were having another child they were ecstatic, of course. At the 20-Week ultrasound they received some news that would change their lives forever. The ultrasound showed that Gracen Sanders had no stomach bubble, he had a heart defect, and his measurements pointed to him having Trisomy 21, more commonly known as Down Syndrome. The Geneticist Doctor recommended getting an abortion, but the Sanders did not even consider that option. At 13 years old, Hannah watched as her father and mother weeped over hearing this news and decided to sing the song Still by Hillsong United . They decided to keep going with the pregnancy and whatever happened would be in God's hands.
Gracen was born premature at 33 weeks and 5 days, and at that time, with the largest esophageal gap ever, with 3 holes in his heart, and with Down Syndrome. But Gracen is a fighter. On May 15, 2009, Gracen was transported from MUSC, where he was born, to the PICU at Boston Children's Hospital Pediatric Intensive Care Unit. Over the next 2 years at Boston Children's he had extensive surgical interventions for his esophageal atresia, eventually a jejunal interposition of the esophagus (the first infant in the United States to be given such a procedure and the second time the procedure was done successfully in the world), and open heart surgery. In total Gracen endured 63 surgeries, coding once while in Charleston and once while in Boston. Gracen fought for his life every single day, often being put into a medical coma so the doctors could perform the necessary amount of surgeries.
Gracen has a complicated medical history including esophageal atresia status post repair via jejunal interposition, AV canal status post repair, Down Syndrome, developmental delay, gastroesophageal reflux disease, j-tube dependent for feedings, laryngeal cleft, chronic liver disease, and chronic lung disease. He must return to Boston Children's Hospital every 1-2 years for ongoing evaluation and management where he must encounter numerous procedures such as an esophagostomy, bronchoscopy, esophagogastroduodenoscopy, swallow study, and evaluation of laryngeal cleft. Gracen is also oxygen dependent.
Gracen finally was able to go home 801 days after he was born, on Good Friday, April 22, 2011. He spent 99% of those days in the ICU at Boston Children's and MUSC. He spent only 22 days in a step-down unit before being discharged.
When you are a baby, most of a kids foundation is built upon those early years. You learn to talk, to walk, swallow, you learn motor skills, you learn how to use the restroom, you learn how to eat, etc. Since Gracen had to try to survive during those early years, he never got the opportunity to learn these things.
As you can imagine Gracen's daily life is nothing like yours or mine. He is always on a set schedule for his tube feeds of water and boluses about every hour and a half, alternating between the two. Just a couple of months ago, he just started to try baby food, but is still having trouble learning how to swallow. He is now asking to try food which is a miracle. He can not speak words yet, but does make a lot of sound, and he knows a version of sign language that the family has taught him over the years. Due to the Down Syndrome, he has muscular atrophy which makes walking a lot harder but he is getting much better at it and most of the time only needs a hand to help him up. He used to have to be in wheelchairs and eventually made it to walkers and to walking around. Also, since he is oxygen dependent, he can't go anywhere without an oxygen tank with him. When he goes to sleep, he has a specialty bed, oxygen is going through his nasal cannula or his CPAP, and he is given continuous feeds.
Gracen does not like loud noises or to be startled, due to the Down Syndrome. He also has a very weak immune system which makes life all the more difficult. He has had trouble going to school because all of the sick kids keep getting him sick. He has to have a breathing treatment and high-frequency chest wall ossillation, otherwise known as Shake Vest, everyday to help with his breathing. We call the Shake Vest his Shakie-Shakie.
Regardless of all the troubles Gracen has had to endure in his life, he wants nothing more to be like every kid. But to do that requires a lot more money than the average kid. For so long, his family were in the "Survival Stage" of this and are now in the "Living Stage." But now they are encountering more and more difficulty with the monetary means to do so. Being in a hospital for a little more than 2 years and requiring over 60 surgeries and constant monitoring to survive, as you can imagine, cost a lot of money. Plus the cost of daily life for the family. For those 2 years in Boston, either Jimmy or Misty was always up there with him, somtimes both. That tremendously decreased the amount of income they brought into their household. Gracen's food for his feeding tube costs $1,200 every month. And it is only that low because he is on Medicaid. Without Medicaid, the Sander's would not be able to pay for everything he needs.
All of this is only a fraction of what is going on but I hope you understand their need for some help. We are only asking for $15,000 because that is the price of Gracen's food for a year. We need your help. These funds will help our family in ways you can't understand. It will allow a little more financial stability in the family for the first time in years, which will also help decreasing some stress. It is becoming more and more difficult to survive with the ever increasing rise in costs. Jimmy Sanders works as the Facilities Manager at Cathedral and Misty Sanders is the Vocal Coach at Cathedral. Cathedral is an interdenominational church in North Charleston, SC that also doubles as a K-12 Private School. Their daughter, my fiance, works for a family friend as a Sales Associate with Wildwood Landing, LLC, and is a distributor of ItWorks!. I am in my first year of Medical School studying to become a licensed Physician and, therefore, have no job and live off of student loans. We all are in a very tight financial spot.
Please help us. If not financially, we ask for your prayers and for you to share this with all of your friends.
- Brad Malone
- Shirley Malone
- Dawn Malone
- Jo Ann and David Swift
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