There is so much we can learn from Madison and Molly. One of the things I have learned is to greet each day with a smile, to appreciate each day we have. Some people dread waking up because maybe they didn’t get enough sleep, they’re tired, or they dread the toils of the day that lie ahead of them.
No matter how they slept, if they were up through the night, if they went to bed late, or if they have to get up early to go to school, Madison and Molly always manage to crack a big smile when they first wake up. Almost as if they are surprised that they are still around another day. If only all of us shared this same appreciation of each and every day, of each and every moment.
Madison and Molly Cooper were born 5 weeks premature, but healthy. They had low birth weight, but Apgar scores were 8 and 9 (10 being perfect). Molly required 6 hours of oxygen and a five-day treatment of Ampicillian, to protect what might have been premature lungs. The girls spent two weeks in the NICU, until they could master the art of feeding. It was an exhausting two-week stay, and I hoped to never return to a hospital again. The first year of life is a daze. Feeding, burping and changing diapers took up an entire day. By 9 months of age the girls were slightly behind in their milestones, common with twin births. At 10 months, Molly had a febrile seizure ( a seizure caused by a high fever). She was rushed to the local hospital and it was determined she had an ear infection AGAIN.
Her pediatrician saw her the next day, and felt it was an isolated case. Only a very small percentage of children who have febrile seizures will develop epilepsy. Tubes were inserted. 4 months later, I watched her twin sister fall over in the floor. It, too, was an isolated febrile seizure. 2 months later, shortly after receiving the DPT immunization, the girls started to have weird episodes. They would vomit and stare into space numerous times a day. After several episodes, we returned to the emergency room. The doctors debated between seizures and gastric reflux, but leaned toward gastric reflux and we were told to see a Gastroenterologist (GI) doctor.
While these episodes continued, day after day, about 10 times each girl per day. I decided to videotape the episodes, convinced they were seizures. By the time we saw our GI doctor, he was convinced as well and sent us to a neurologist. We went to our appointment some weeks later, no doctor overly concerned. The neurologist ran a series of tests, including an EEG (brain waves)- all normal! The doctors didn’t think anything was serious, but meanwhile the episodes continued and worsened. Less than 8 weeks, another EEG was done and this time abnormal results concurred a seizure disorder and the girls were put on Tegretol, an anticonvulsant medicine.
The Tegretol did not control the seizures and made the girls into zombies. They literally did nothing but eat, sleep and have seizures ALL day long. Prior to medicine and seizures, the girls were able to crawl, walk while holding onto furniture or a push cart, use a spoon and a cup, watch TV, say dada and hi, wave, clap and play with their favorite toys. Thne one day, without warning, all the laughter and playing stopped.
4 months later, the girls had a MRI that showed some abnormalities in mylenation patterns and gray matter, but was generally inconclusive. They switched the girls to Depakote, which seems to work better, but did not agree with their liver, and was later discontinued.
Then the testing began. Blood test after blood test. Chromosome analysis, Angelmans, Fragile X, Rett, Autism, hearing, vision, and every lipid storage disease available (liver), echocardiograms (heart), overnight EEGs, second MRIs (brain) – nothing! Except from the seizures, all tests were normal. Neurology suggested we see GI again. Liver function tests were elevated and the GI quickly announced the girls must be taken off Depakote. I was so scared. Although the seizures were not under control, at least the girls were laughing again. He opted for Lamictal and felt that a liver biopsy was warranted. He also mentioned that a muscle biopsy could be performed to test for Mitochondrial Diseases. It wasn’t likely, but they had begun to see cases of Mitochondrial Disease in children similar to the girls. We agreed. The test proved correct- Madison was diagnosed with Complex I, and Molly assumed the diagnosis. I could hardly believe it. It wasn’t supposed to be Mitochondrial Disease!
I knew what it was like to wait and wait for testing to come back. But this time was different. I wasn’t that anxious, afterall, testing always came back normal. It was two years, almost to the date, that the seizures had begun and a diagnosis had been made. It was over! The testing could finally cease. I felt relieved. I felt bad to be excited, but we finally had the answer. And the timing couldn’t have been better.
It would be only 5 weeks until The United Mitochondrial Disease Foundation would hold their annual conference in Cleveland, Ohio. I immediately found UMDF on the web, and suddenly felt comforted by its website and other family members. I attended the conference and met such wonderful people. This diagnosis is unpredictable and frightening, but I knew I was not alone. There was an entire UMDF family out there, willing to help and console. A family, whose many members, I have never met.
It has been two years since the diagnosis and my daughters turned five this year. They suffer from seizures, mental and physical retardation, elevated liver testing, muscle weakness, vision problems, but they are two of the happiest kids you will ever meet. Don’t ask me where they are in levels of milestones, I threw those books out two years ago.
If it weren’t for UMDF, there would be thousands of people lost. I would like to thank UMDF for its dedication and hard work, for connecting families, and for hosting the conferences. I would like to thank my family and friends who have and continue to pray and pray for my daughters. Thank you to the various churches that have Madison and Molly on Prayer Lists. Just because there hasn’t been a cure found YET, do not think your prayers went unanswered.
3/20/2004- UPDATE:
Wow! The girls are getting so big. It is taking its toll on me physically, but mentally, I feel better than ever! I finally realize, Molly and Madison are the true heroes in this story. They endure so much with bravery and a smile. They continue to teach us so much. I really believe these two little 7 year olds have done more than most will ever do in their lifetime.
Madison was granted a Make-A-Wish and we traveled to Disney World in October 2003 and stayed at Give Kids The World Village (www.gktw.org). Two words: ABSOLUTELY AMAZING!!!! The girls had more energy and “life” to them than we have ever seen. I jokingly asked if they pumped oxygen into Disney, like the casinos 
We plan to go again for their 8th birthday and Christmas! In a place truly magical, I can’t wait to see what they do for Christmas!
