• Training sessions-we have a presentation that we use for training and awareness and will bring it to your event, office, or meeting.
• Media coverage-with the help of VIP Magazine, the Clarion Ledger, WLBT, WAPT, KPLC, Lake Charles American Press, Sun Herald, Northside Sun, Vicksburg Post, Rankin County Ledger and other media, we have experienced local advancement of mitochondrial disease awareness. Our families have shared their personal stories in order to raise awareness and help others affected by mito. Please share your story too or there will never be a change for the better.
• Publications-one of our mothers wrote an article about mitochondrial disease, see below to read.
• Fundraisers-with the local help of McLaurin Elementary's Coins for a Cure and Stop Mito in GENES, the Daily Equipment Christmas Drive, and families who sold raffle tickets for Vacation for a Cure, we have raised over $3,000 for UMDF.
• Awareness-let "Mighty Ms. Mitochondrion" visit your disability events, speak to your organizations, and visit your classrooms.
• MITOCHONDRIAL DISEASE AWARENESS WEEK in Mississippi! The third week in September marks Mitochondrial Disease Awareness Week in Mississippi.

• To find all the affected families in Mississippi and offer them guidance and resources.
• To create a network of medical professionals and therapists who understand this newly emerging disease and can assist with the best care, faster diagnosis, and resources.
• To educate others about the mitochondria's role in mitochondrial disease, type 2 diabetes, Parkinson's, atherosclerotic heart disease, stroke, Alzheimer's disease, and cancer.
• To set up a booth at your disability event, conference, or scientific meeting.
• To visit your classroom to teach students about mitochondria.
• To continue fundraising, including "Dressed for Mito Awareness" in October.
• To provide CDs of UMDF symposia sessions for local medical libraries and doctors.
• To develop a courtesy committee.

If you would like to add your child's picture or write-up to this webpage, please email Julie.

Addison has an unspecified mitochondrial disorder and autism diagnosis. She has elevated lactic acid and an elevated lactate to pyruvate ratio.

She has almost no language, eye contact, and suffers from sensory integration dysfunction. Addison has an extremely high pain tolerance. She was born 8 weeks premature and spent 3 weeks in intensive care. Addy gets weekly therapies and special instruction. Her brother (below) shares her diagnosis.

Her mother and father lead the Children's Autism Support Team of MS (CAST). Their youngest sister currently shows no signs of mitochondrial disease.

At the age of one month Breanna had RSV. After that she started to hold her head to the right side of her body. This went on for a week, but the doctor didn't think there was a problem and gave her the two month shots. The next two days Breanna started having seizures. Breanna stayed in the hospital a month. She also suffers from "dancing eyes", Opsoclonus Myoclonus syndrome, a rare neurological disorder. Breanna had nerve testing and muscle testing. The nerve test came back fine, but the muscle test showed that her muscles were too small for her age. Her doctor ordered a muscle biopsy. The MRI showed white matter changes. The muscle biopsy showed that Complexes 1 through 4 had deficiencies consistent with a mitochondrial disorder. The doctor put Breanna on a vitamin cocktail and no sugar/starch diet. Breanna has a better control of her head now. She has always been alert to her surroundings, and has not had any seizures for years. She gets therapy three days a week, where she is learning to reach for things and hold them in her hand.

Jude's symptoms were obvious in infancy, but nobody thought it could be mitochondrial disease because "he looked normal." We all knew something was wrong, but we didn't know what. The investigation began at 2 1/2 months and Jude was diagnosed at 15 months with his preliminary results from a muscle biopsy. His in-depth results came in August 06. He suffers from Mitochondrial Myopathy with a Cytochrome C Oxidase (COX) deficiency.

He was diagnosed Failure to Thrive and was put on 24-hour feeds at 3 mo. He wasn't meeting milestones and experienced vomiting and other GI issues. Amongst many other problems, an MRI revealed "decreased white brain matter" and an EMG revealed myopathy.

Many of his issues have been temporarily resolved with a G-Tube, a supplemental "cocktail", a high fat/protein and low sugar diet, and a flexible sleeping schedule. Any virus causes a risk of setbacks.

McKade has an unspecified mitochondrial disorder and an autism diagnosis. He has elevated lactic acid and an elevated lactate to pyruvate ratio.

McKade suffers from white matter death and damage. He struggles with OCD. Other problems include sensory integration dysfunction with a significant tactile defensiveness and an extremely limited vocabulary. McKade gets weekly therapies and special instruction. His sister (above) shares his diagnosis.

His mother and father lead the Children's Autism Support Team of MS (CAST). Their youngest sister currently shows no signs of mitochondrial disease.

Nick suffers from mitochondrial disease. He has increased levels of lactic acid and some ragged-red fibers.

Nicholas was born with only one eye muscle, causing eye alignment issues. He has a VSD (small, about 2.5mm) heart, developmental delays, muscle weakness, and ataxia. He attends school, but he still cannot walk. He has fairly frequent unexplained seizures/tremors and a tremor in his left arm.

He is on medications in efforts to control the seizures/tremors. Nicholas can only speak a few words, but he comprehends well. Speech therapy is making slow improvements with this.

Zach suffers from mitochondrial myopathy and presented with symptoms at age 4.

He was having balance issues, so his parents took him to see a neurologist for fear of a tumor. His bloodwork revealed elevated lactic acid and his biopsy revealed ragged-red fibers and mitochondrial proliferation. He suffers primarily from myopathy and GI issues. He currently takes medication for his GI problems and muscle pain. Much to his parents' surprise, he also was diagnosed with "mild heart weakness."

Zach uses a cooling vest, and it has helped him be able to enjoy the outdoors. Despite the pain, he takes karate and swimming to help build muscle tone and reduce the aching.

Zach's mother Tracy recently wrote and submitted an article about mitochondrial disease to a national magazine for Speech Pathologists and Audiologists. It was selected and published. You can read the online copy (Vol. 17 • Issue 26 • Page 10) at
ADVANCE for Speech-Language Pathologists and Audiologists.

Landon suffers from myopathy and a seizure disorder with suspected mito. He is fed via G-Tube, and has had little to no GI problems since he started tube feedings. He was able to eat by mouth until age 3. He also has cortical blindness and global developmental delay.

Landon is growing very well, and he is 40" tall!

Shelby suffers from abnormal oxidative phoshylation. Her mitochondrial defects are in complex I (a-decyl CoQ)-0 and complex I assay (CoQ1 )-73. She has a seizure disorder and has not had definitive spells. Shelby eats only pureed foods. She makes sounds but can't talk, sit alone, or walk.

Christopher was diagnosed at 18 months with Leigh's disease, a progressive and fatal mitochondrial disorder. He was placed on a high fat/protein diet with no sugar and started taking B1 (and other vitamins and supplements followed).

It all started when he had an ear infection at 9 months. Upon taking his medicine, he experienced a total regression. He also suffered from lactic acidosis and wobbly gait. At 7, his parents took him to the San Diego Medical Center, where his disease was confirmed. At 7, he started using a walker, with which he loved to clown around. By 10 Christopher was in a wheelchair.

Christopher graduated from high school, but his poor vision made his classes difficult. He died of at age 20. Christopher has one brother who is not affected.

Eric suffers from mitochondrial disease and also falls under the Autism Spectrum with a Pervasive Developmental Disorder (PDD) diagnosis. He's had 7 eye muscle surgeries, the 1st at 11 months. He was late walking, talking, growing teeth, reading, and riding a bike. He has been experiencing migraines since age 3. He was also diagnosed with epilepsy in 2006.

Despite his physical challenges, Eric remains on the honor roll at school.

Charlotte has been struggling with her disease for the past 10 years and just got her mitochondrial myopathy diagnosis last year. Until that point, her questions about her strange problems went unanswered. She recalls being so sick that she had to stay in bed for about a year.

Her adult-onset problems appeared in her late thirties with loss of bowel and bladder control, blurred vision, and trouble with balance. It was also difficult for her to eat. As the disease progresses, she deals with vision impairment, heart problems, and autonomic dysfunction. She is now in a wheelchair, but she maintains a positive outlook and wants to help others with the disease. If you are an adult suffering with mito, you can contact Charlotte at shad47@earthlink.net.

On February 19, 1998, Ben entered our life. He was a beautiful full term baby boy and our third child. Ben received the minimum state-mandated newborn screenings after he was born and was thought to be healthy. During routine well-baby check-ups, Ben was thought to be a typical child. He was growing and developing normally. During his brief 2 ½ years of life, Ben had learned to swim, to identify landmarks on the way to his grandparents' house, to distinguish among the vehicles his various grandparents drove, to drive his own little Power Wheels Ford Pick-Up Truck, to pick out his Daddy's backhoe key among a cluster of other keys, and had become fully potty-trained. He seemed so normal, so healthy.

Little did our family realize that a "silent killer" was present in our Ben. On Monday, August 7, 2000, Ben became ill with vomiting. He had no other symptoms such as fever or diarrhea. He had been sick with vomiting before, so, we treated him by forcing fluids and small amounts of food to prevent dehydration. Vince and I stayed up with Ben until 10:30 while continuing to give him drinks. He slept on a pallet beside our bed that night. At 1:30 A.M. the next morning, I awoke to find Ben opening and closing his eyes, but unresponsive to our commands. Suddenly, Ben stopped breathing and his heart stopped beating. I began CPR immediately on our living room floor while whispering what I feared might be my last words to my son. Vince was on the phone searching for advice and help from 911 while asking Ben to come back. Ben didn't come back. He was transported to the local hospital by helicopter where attempts were made to revive him. No one was successful. Our apparently healthy son was dead within 12 hours of showing symptoms of illness. Doctors and state health officials speculated about the cause of Ben's death for almost a month. The list of misdiagnosis included: sepsis, meningitis, mosquito-borne encephalitis, and Reye's Syndrome. About a month after Ben's autopsy, we learned the real cause of death, a disorder we had never heard of before, MCAD. Adding to our devastation, about a week after Ben's MCAD diagnosis, we learned that his disorder could have been detected at birth or any other time before his fatal crisis with a $25 blood test. With this simple, inexpensive screening, doctors would have been able to diagnose Ben's "silent" disorder. With an early diagnosis, a treatment plan would have been devised and Ben's prognosis for a normal, healthy life would have been excellent. One doctor told us that with early detection of the MCAD disorder that Ben would most surely be alive.

Since Ben's death, we have been very busy promoting expanded newborn screenings. We have written local pediatricians and obstetricians/gynecologists several times. We have written our legislators. Two local state representatives wrote a bill to require that doctors at least inform parents of these additional tests that are not required by law so that parents will have a choice to test their children, a choice we never had. The bill was titled, "Ben's Bill". It was signed by the governor into law during a special ceremonial signing on Monday, April 16, 2001. Although our lives will never be the same because losing Ben was so unnecessary and unacceptable, we are proud of Ben's impact on the future of children's health in our state. We will continue our efforts to mandate CNBS in our state so that our children will have the best chance for a healthy life and parents will not have to endure such immense pain.--written by Robin Haygood, http://www.savebabies.org