Real Stories

Real Lionheart Battles SMA

February 2010 - Every day is like Valentine's Day for the Goodson family. That's because every day that their beloved Jacob lives is a day to celebrate the love and dedication of a tight-knit family who has refused to back down from a fight to keep him alive. Jacob

Jacob Christopher Goodson has Spinal Muscular Atrophy (SMA) -- a diagnosis that was made soon after he was born. SMA is the number one genetic killer of children. Most children born with SMA do not reach their second birthday. Today, three and a half years later he has beaten the odds with courage surrounded by people dedicated to his survival.

He cannot walk or crawl. He can only sit if using a special chair and with neck and torso support for short 30 minute intervals. He cannot eat or drink by mouth and has a gastronomy tube in his stomach. His diet is closely monitored and he receives nursing care for 18 hours a day, which includes three one and a half hour breathing treatments, physical therapy, speech therapy, occupational therapy and water therapy. Jacob does, however, attend school in a special setting and is loved and cherished by his teachers and caregiver as he astonishes them daily with his desire to experience a rich and full life.

Jacob is learning how to drive a power chair so that he can run and play with his sisters and friends. This is a long and tedious task since the simple act of sitting up, although completely supported, puts a tremendous amount of stress on his bones, muscles, and respiratory system. Jacob is also learning how to talk via the computer technology of the Echo system. This tool helps Jacob to scan a computer screen using a switch to choose the words he needs to put together to be understood. As Jacob develops cognitively and is more aware of the abilities of his peers, his desire to learn and grow swells and his parents are very sure he will be mobile and verbal very soon. His life today is a stark contrast to what his family hoped for him when he was born on June 14, 2006. He and his twin sister, Melanie Faith, were a bit jaundiced, but in all other regards healthy at 35 weeks. Their parents, Todd and Jennifer Goodson, and the babies' older sister Caitlin Scarlett could not have been more pleased to have the new additions to their family. Not soon after becoming a family of five - they were all in for a real treat - a trip to the beach with Mrs. Goodson's parents and grandmother. Her "GranGran" loved holding the babies especially rocking them on the back porch. During this precious time she said that she noticed a marked difference between "Mellie's" back compared to Jacob's. Her's had tension while Jacob's did not. The Goodsons thought it a curious difference, possibly one that distinguished girls from boys.
"Girls develop faster than boys, right?"
At the two month appointment the doctor knew something was not quite right. Mellie was trying to roll and lifting her head and Jacob was less mobile. They were referred to a neurologist to assess Jacob's immobility and see if there was a developmental delay. Tests followed and in September they were told that Jacob had Spinal Muscular Atrophy (SMA), more than likely type 1, the most severe. Information on the Internet led the couple to believe that the odds were against them. Stunned, Mrs. Goodson realized that Jacob would never sit, talk, or walk and that there was no cure.
"I cried, and cried, and cried, how could God do this to our family?" she said.

The Goodsons reached out to their family and church, grieving first, but determined to take the next step, whatever that was, despite the grim prediction. "The doctor said you need to take him home and love him as long as you have him," she said. Jacob They began working with a gastroenterologist and a pulmonologist to assist in Jacob's eating and breathing. With the help of Martha Kearse, a Minister of Children at their church and former English teacher, the two composed a letter asking if anyone within the church family and friends knew of SMA or had resources or information that could give them another avenue to explore in an effort to save Jacob's life from this horrible disease. A dozen emails were sent out and the connection was made immediately with Dr. Ching Wang at Stanford Medical Center in California.

Dr. Wang called the couple and thought Jacob would be a good fit for his study, which is funded in part by the Hope and Light Foundation. Dr. Wang was experimenting with using hydroxyurea to help make the protein that SMA children need to keep their muscles healthy. The family traveled back and forth to the state for months not certain if Jacob was receiving the drug or the placebo as part of the double-blind stage of the study. In May 2007, he entered the open-label portion of the study in which he received the drug. Improvements were seen despite a bout with RSV which had Jacob hospitalized for four weeks where it seemed things were going backwards. Jacob pulled through and today has movement in his hands and wrists, and his feet and ankles. He can move his arms and legs from his torso when he is in the water. The ordeal has cost a great deal of time and money, but essential to keep him on the track of improved health. "It is only through the goodness of others that we are able to do everything we can do for Jacob," she said.