Stem-cell treatment may give a young girl vision
Kacie Diane Sallee was welcomed into the world by her parents, Miranda and Stephen Sallee, on April 27, 1999. Although she had a problem during her first few days of life keeping her blood sugar level up, she was soon ready to go home with her proud parents.
"She had to stay in the hospital until she was a week old," Miranda said. "But then, we got to take our healthy, happy baby home. She did get jaundice like most newborn babies but eventually got over it. Life was good."
When Kacie was almost three months old a comment by a family member drew attention to a problem the young parents had not seen.
"I was talking to my Grandma Betty and Aunt Pat at church when they told me they didn't think Kacie was using her eyes or acting like they thought she should be," Miranda said. "I was so hurt. How dare they tell me something was wrong with my baby."
Miranda made an appointment with Kacie's pediatrician.
"When he asked me why we were there, I told him I was there to make my grandma happy," Miranda said. "He told me Kacie would need to see an eye doctor."
The eye doctor didn't tell the Sallees what they thought they would hear -- an affirmation that nothing was wrong with their baby girl. Instead the doctor said that something wasn't right and sent them to Arkansas Children's Hospital in Little Rock. The news they received was anything but comforting.
"We met with Dr. Brodsky at ACH," Miranda said. "He told us that Kacie was blind and that she had something called Septo-Optic Dysplasia. When we found out that Kacie couldn't see we were so hurt. I didn't like to talk about it. I guess I pretended nothing was wrong. I asked myself, 'Is this my fault? Did I do something wrong? Why did this happen to my baby?' "
A child with Septo-Optic Dysplasia (SOD) has under developed nerves from the eye to the brain. People with SOD may also have abnormalities of the brain and a poorly functioning pituitary gland. This condition is also known as Optic Nerve Hypoplasia and DeMorsier's Syndrome. According to several medical sources there is no cure for this type of blindness.
"While we were at ACH Dr. Brodsky set up an appointment with the endocrinologist, Dr. Kemp, so he could check Kacie's hormone levels," Miranda said. "Her thyroid and cortisol levels were very low. He gave her some medicine that day. Kacie instantly became more alert and active like most babies her age. To this day, if Kacie has any stress on her body, like a broken bone or a fever over 101 degrees, we have to triple her dose of cortisol medicine. If Kacie gets very sick and cannot have her medicine she could die, because her body cannot fight off the sickness by itself."
Miranda says they returned to ACH every three to four months to keep track of Kacie's hormone level. Everything seemed to be fine until Kacie was 3-years old. "Then we noticed she had quit growing. She had worn the same size clothes for over a year," Miranda said.
Kacie began receiving growth hormone shots, and is today growing and close to the size she should be for her age.
"Now that Kacie is older, we only need to go to ACH every six months," Miranda said. "She is taking her medication, and is a healthy, growing 8-year-old girl -- but, she is still blind."
Today, Kacie is a third grade student at Nelson-Wilks-Herron Elementary School in Mountain Home. Although Kacie can see shadows and really bright objects, she cannot see anything clearly. This disadvantage has not kept her from learning. Her teacher, Cindy Childress, has nothing but praise for this brave little girl.
"Kacie is a sweet, hard working student," Childress said. "Although she is visually impaired, Kacie works just as hard as the sighted students. She works independently using a Mountbatten Braille Machine to type answers, practice spelling words, work math problems and write stories or letters. Kacie has the same assignments as the other students. She is dedicated and determined to do things like her classmates."
According to Childress, Kacie gets around the school using her cane. "Our school is quite large, and she is able to find her way to our classroom, the music room, library, computer lab, physical education room, art room, cafeteria and restroom," Childress said.
The Mountain Home School District has a teacher for visually impaired students. She comes to Kacie's class several times a week teaching her to use the Mountbatten Braille Machine and assisting her with class subject areas. She also brailles pages and assignments that are used in the classroom, according to Childress.
"The children love Kacie and are always eager to assist her if she needs help," Childress said. "Kacie has a special place in my heart, and she is a joy to have in my classroom."
Although Kacie is learning to live with her blindness, her family continues to look for ways to improve Kacie's life. This past summer a news report by Joy Robinson with Springfield, Mo., television KOLR 10, told the story of 6-year-old Missouri girl, Rylea, who was born with the same condition Kacie has. In July, Rylea was one of the first patients to participate in a new treatment using stem-cells taken from umbilical cords.
According to reports, Rylea and her mother traveled to Hangzhou, China, where Rylea received three spinal stem-cell transplants and two IV transplants. The results? Rylea's eyes began to react to light; she has seen the faces of her mother, brother and sister; and was able to detect a big "E" on an eye chart across the room in the office of Dr. Larry Brothers, her Joplin, Mo., optometrist.
Kacie's family is excited. This break-through research may be the first step in helping Kacie see the things a sighted person takes for granted.
According to the Web site for Stem Cells China and Beike Bio-Tech, "a baby's umbilical cord, once considered medical waste, is a rich source of stem cells. Cells considered as the body's 'master cells.' These are the basic building blocks of the human body, able to transform into blood, organs, tissue and components of the immune system. Stem cells reproduce and differentiate into many other cell types, including but not limited to: bone, heart, muscle and nerve. This is the miracle of cord blood."
The treatment being offered by Stem Cells China is not available in the United States. According to its Web site the procedure takes harvested umbilical cord stem cells and transplants them into the patient. The objective is to "shock" the optic nerve with the enormous amount of stem cells, as well as additional neuron growth factor cells, which are supposed to guide the stem cells to the damaged nerve cells. This treatment is followed with treatment in a hyperbaric oxygen chamber. The results have so far, been promising.
Controversy in the United States exists with embryonic and fetal stem cells. To access these types of stem cells a fetus or embryo has to die bringing about the ethical issue of when a new life begins. The use of umbilical cord blood is largely uncontroversial. This is what is used in the stem-cell treatment in China.
The cost of the treatment may seem low when compared to medical costs in the United States, but is still expensive and not covered by insurance. The stem-cell treatment will cost Kacie's family $30,000. Added to this will be the cost of airfare, food and housing for 30 days, passports, visas, shots and other incendentials. Family and friends are hoping to raise $50,000 to pay for the treatments and trip. If fundraising efforts go well, Kacie and her mother could be traveling to China this summer for the treatment.
Kacie's grandmother, Diane Walker, has been employed by North Arkansas Electric Cooperative for several years. Diane and husband, Jerry, are residents of Gepp.
Kacie's father, Stephen, was recently hired as a lineman for NAEC.
This past week, according to Kacie's family, NAEC employees made a large donation to the family to help fund Kacie's trip to China.
"Instead of Christmas gifts for each other, the employees of NAEC decided to donate the money they would have spent on gifts, to Kacie's family," said Jerry Estes with NAEC in Salem. "In addition, some made donations in amounts above the gift cost. NAEC employees wanted to help this family in their fundraising effort."
An account in the name of Kacie Sallee has been established at First Security Bank in Mountain Home.
Individuals or clubs interested in helping with this fundraiser can contact family friend, Sharran Quick at 870-458-3004 or by e-mail to email@example.com, Kacie's grandmother, Diane Walker at 870-458-2502 or Miranda Sallee at 870-491-5003.
"When Kacie was born eight years ago, they told us there was nothing that could be done for her blindness. No hope of her ever seeing the things that we see and take for granted," Kacie's mother said. "Now there is hope, and it is in China. Please help us give this to Kacie. Kacie's hope is Vision."