10-year-old fighting mitochondrial disorder

Published 11:11 pm Thursday, April 3, 2008

MOULTRIE — Taylor Anderson seemed to be a healthy baby up until he was 2 years old and then his parents started to see signs that something was wrong with their son.

“He hit all the milestones,” said his mother, Amanda Anderson.

She said doctors told her that Taylor, who is now 10, was born with mitochondrial disorder but his problems did not start until he was a toddler.

According to the United Mitochondrial Disease Foundation, this disease results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common, the foundation’s website said.

Anderson said one of the first signs that something was wrong was that Taylor would “lose his breath,” turn purple, and his whole body would stiffen up. After the episode was over, he would then sleep for three or four hours. Debbie Cobb, his maternal grandmother, said they were told that he was holding breath purposely to get attention.

“We knew that there was something wrong with Taylor,” Cobb said.

She also said they were told to throw water in his face to stop him from holding his breath and it made her very mad because she knew he wasn’t doing it on purpose. The Andersons were persistent because he was also starting to lose his balance when standing.

“It took them about six months to realize,” Anderson said of the doctors and medical staff.

Then they were told that maybe Taylor was having seizures and he was sent to a neurologist in January of 2000. The tests came back normal but he was still having the episodes from two or three times a day to two or three times a week, Anderson said. She said in 2001, he had another electroencephalogram (EEG), which is a test that measures the electrical signals within the brain and records them on a graph. She said she actually looked at the report herself and she realized that his brain was “flat lining.” So, she asked her pediatrician to explain the occurrence to her. She and the doctor brought this information to the attention of the neurologist and after more tests and three months later, he was diagnosed with mitochondrial disorder. The test that finally pin-pointed what was wrong with him was a muscle biopsy.

In the meantime, Taylor had been losing his hearing and vision and was going to occupational therapy. He was also wearing braces on his legs and in 2003, they realized that he wasn’t growing.

“He’s had to have growth shots,” Anderson said.

Cobb said they were told that Taylor wouldn’t have a long life expectancy and this disease can affect anyone at any age.

“It’s a very progressive disorder,” said Anderson.

Last year in January, Taylor started having problems with his blood, she said. His hemoglobin numbers were really low and Cobb said it seemed like he was getting blood transfusions about every two weeks. It was the Medical College of Georgia who diagnosed him with chronic anemia, said Anderson.

“We’ve been with them since 2006,” she said.

Anderson said they asked their pediatrician to help them find another hospital because it seemed that the Medical College of Georgia had reached “their wit’s end” and had done all they could for Taylor. So, their pediatrician did some research and found The Children’s Hospital of Philadelphia, Pa., where they will be traveling to this month, via Angel Flight, a non-profit group. Anderson said she is looking for more information about the Mitochondrial Disease and what they have to look forward to.

“We’re trying to see if the anemia is a part of that or if it is something totally different,” she said.

She said they would also being looking for other options to the blood transfusions because doctors have had to put a port in Taylor.

“I just want them to be straightforward with me,” she said.

Cobb said that every time something new shows up they wonder if “this is it.”

“Now he’s losing his fine motor skills,” said Anderson.

Anderson worked up until May of last year and then had to quit her job to take care of Taylor, who had progressed to a point where he could no longer attend the Pathways program at the Vereen Center. Through the program, he now receives his therapy at home.

“We’ve got a good support system through Vereen,” she said.

However, the disease has been quite a financial strain: The medicines, blood transfusions, and the cost of trips to see out-of-town specialists has taken their toll on this one income family. In addition to Taylor, the Andersons have an 8-year-old daughter.

Anderson said that they have not been able to afford to see the leading doctor in Atlanta on Taylor’s disorder because he won’t accept Medicaid. However, she said she understood why he wasn’t able to accept it and seemed to be positive about their hopes for the hospital in Philadelphia, Pa. She said there would be a variety of doctors to address his needs.

“I’m hoping that there’s something they can do,” she said.

“We’ve been lucky with Taylor,” said Cobb.

She said there were worse symptoms he could have had and some of the other children with this disorder have already “passed.”

“Taylor is happy and he’s loving and he gets frustrated a lot. He wants to run and tumble,” said Cobb.

Anderson said they have found a lot of helpful information on the disease through the United Mitochondrial Disease Foundation website at www.umdf.org.

“It’s got all the symptoms,” she said.

Anderson said the Moose Lodge and its individual members have done a lot to help her family, including giving donations.

“A lot of the community has come up and offered donations and prayers. We didn’t know that everyone would be so generous,” she said.

East Side Baptist Church will be having a benefit dinner and sing on Saturday, May 3, with dinner starting at 3 p.m. and the sing at 5 p.m. The chicken dinner will be for a donation of $5, eat-in or take-out. The featured groups will be The Believers of Adel and The Georgia Boys of Moultrie.

There is also a fund set up in Amanda Anderson’s or Debra Cobb’s names for the Taylor Anderson fund at Ameris Bank and people can make donations at any location. For more information about the fund, call Anderson at 891-6494 or Cobb at 985-8957.

“Any parent out there who thinks there’s something wrong with their child, don’t hesitate,” said Cobb emphatically.

“Yeah, keep pushing it,” Anderson agreed. “The quicker they find it and diagnose it and the quicker they treat it. It might help it not to progress.”



Email newsletter signup