Faith, persistence help parents, Abby beat killer

Tue, 03/11/2008 - 4:25pm
By: Ben Nelms

Faith, persistence help parents, Abby beat killer

Abby Sullivan is an outgoing 6-year-old who does all the things little girls do. She plays soccer after school and has sleep-overs with friends at her home in Peachtree City. She takes trips with her parents, Don and Dawn.

But such was not always the case, because Abby is a walking miracle. Abby was not held back by what her parents believe were the affects of mercury in the preservative thimerosal contained in her childhood vaccines or the mass of epileptic seizures she endured or the mitochondrial disease with which she was diagnosed.

She has something else on her side, something beyond the glyconutritional supplements that dramatically changed her life. In the hearts of Dawn and Don Sullivan, Abby is the little girl who embodies the evidence of things not seen through the sovereignty of God.

Abby was found abandoned in a cafe in Kazakhstan in the southeast part of the old Soviet Union on April 18, 2002. Her age could only be estimated, and her birthday was placed on July 18, 2001.

She was kept in a hospital for three months on the chance that relatives would come looking for her, Dawn explained. That day never came. But another did a few months later. It was the day Abby was adopted by Don and Dawn.

“We came home with her and were as elated as any new parents would be, especially those who feel they had just been handed a gift from God,” Dawn said. “Within three months we realized something was wrong. Something in the back of your mind says it could be seriously wrong. There’s this little part of denial that kicks in, but we were pretty sure.”

Dawn said Abby’s physical condition worsened rapidly. Coincidence or not, it was exactly two weeks after the occurrence of something so routine that most parents consider it a simple matter of routine healthcare. It was two weeks after Abby was vaccinated.

The little girl began experiencing seizures one day while Dawn and Don were waiting with her to be tested at the hospital. With seizure activity evident, more tests were run, but all the spinals, CT scans, MRIs and blood work came back normal. And all the time the seizure activity intensified in frequency.

“The seizures began to grow in number and they spiraled out of control. And before we knew it she was having 30-40 a day. We tried many medications but nothing worked,” Dawn said. “All the while we knew her body was screaming that something was desperately wrong. The frustration of not finding the answer is choking. Desperation sets in and the clock is ticking. You have this huge responsibility as a parent but there is nothing you can do.”

Dawn is clear that the partial complex, tonic/clonic and “laughing” seizures, with spiraling frequency and intensity, had their onset two weeks after the vaccines were administered.

She said it was likely that Abby had been having seizures of less frequency and duration during nighttime sleep hours when neither she nor Don would have been able to observe them.

But as the minutes turned into months, Abby’s condition continued to slide in a rapid, frightening descent, like a nightmare from which there is no awakening.

“In about a year’s worth of time and during numerous hospital visits and second opinions, Abby lost the ability to walk, the ability to talk, the ability to eat,” Dawn said. “When she came here at 21 months she was climbing and running and walking and talking and learning English 90-to-nothing. Before we came home from Kazakhstan with her, she had learned 30 English words. But she lost everything.

“At first she started stumbling and running into doors as the epilepsy increased to 16 seizures a day. By the time she was having 20 seizures a day, she could only crawl and had trouble holding her head up. At 30-40 a day she could not hold her head up, she was drooling and completely non-verbal. But I could see in her eyes that she was still completely there, which is a hell in itself to see that in your child.”

Don and Dawn researched every possible suggestion by doctors, including the advice by one doctor to remove half of Abby’s brain to lessen the severity of the seizures. The theory was that, at her age and with extensive therapy, Abby could re-acquire the functions and skills she had lost.

“We hit our knees and prayed about it because removing half the brain is a huge deal,” Dawn said, her voice breaking a little, her eyes unmistakably filled with emotion as she recalled the occasion and the ramifications of the recommendation. “But at the same time having 30-40 seizures a day is a huge deal. So we went and did that test and hung on to that hope and we found that the seizures were all over her brain. So we lost that option.”

In January 2005, while manually stimulating Abby’s cheeks and throat just to help her swallow oatmeal and applesauce, Dawn came to the realization that a feeding tube had become necessary for their little girl. Abby’s weight had dropped to 20 pounds, less than she weighed when she arrived from central Asia.

As part of the treatment approach, Abby had been put on a doctor-recommended ketogenic diet, a very high fat, low carbohydrate diet recommended for children with epilepsy that is difficult to treat. Dawn firmly believes that diet contributed significantly to Abby’s downward spiraling condition.

“Her meals would consist of three and four slices of butter, three green beans, two bite-sized pieces of chicken and three grapes,” Dawn said, recounting an example of the diet regimen. “So basically her body was starving to death.”

And it was around this time, with medical science failing them, that Dawn had began to research mitochondrial disease.

“I would spend hours on the computer, punching in her symptoms, looking for anything that would give us answers,” said Dawn. “I found mitochondrial disease and found that she matched all the symptoms. But the neurologist we were working with wasn’t willing to test her for mitochondrial disease. We finally went to Emory and started working with another neurologist. Abby’s rapid decline triggered the neurologist’s thinking that it was something degenerative. So she tested for mitochondrial. We got the diagnosis that she has mitrochondrial disease, affecting every cell of her body. The mitochondria in our bodies affects everything.”

Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function, according to United Mitochondrial Disease Foundation (UMDF).

In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy. For many, mitochondrial disease is an inherited genetic condition, while for others the body’s mitochondria can be affected by other environmental factors, according to UMDF.

Today, the definitive link between mitrochondrial disease, epilepsy and thimerosal is a debate that continues to be fought by parents across America.

It was also in January 2005 that a friend told the Sullivans about a different approach to treating Abby’s debilitating condition. Like many of those with conditions deemed as incurable or medically tenuous, Dawn and Don were willing to hear suggestions aimed at helping their daughter, regardless of how far-fetched they might sound. And as sometimes occurs in life, what was once supposition becomes substance and what was once conjecture becomes concrete.

“At this stage of the game I was willing to dance around a tree,” Dawn said plainly. “My friend told me about glyconutrition. She went to a conference where one of the speakers talked about a child with mitochondrial disease who was on a feeding tube at 2 years old, at death’s door. So we were willing to try it. It was a last ditch effort. Our child was days away from a feeding tube. She was conscious but she was in a vegetative state. So we started it on Jan. 26, 2005. And on Jan. 28 Don found her sitting up in her baby bed holding a stuffed elephant that she had not even known existed for the past six months. It absolutely blew us away.”

After that, everything began to change. Two months later Dawn was teaching Abby to walk again. Abby slept in her parents‘ room for four nights during a trip to the mountains in April. During that trip she had no seizures. By summertime Abby was learning to talk again. But that was only the beginning. The next year Abby entered kindergarten and began playing soccer.

“She kept getting better and better and better and we kept her on the glyconutritional supplements,” Dawn explained cheerfully. “On top of gaining all her abilities back, she had stopped having seizures. We weaned her off the seizure medication and she went 20 months without seizures. We were living with a miracle.”

Abby did have a temporary reoccurrence of seizure activity that was controlled by increasing the glyconutritional supplements and administering the seizure medication she had previously taken. The seizures began again in December 2007 but are under control again today.

Dawn said the family saw the benefits of nutrition in Abby’s life and they began eating much better than before.

“We started eating organic, eating whole foods. We became aware that we have to take responsibility for our health and we have to take responsibility for knowing what is in the things we are putting in our bodies,” Dawn said. “And we have to be parent advocates, being proactive rather than reactive. So to this day we fight to make Abby’s life as good as we can, through nutrition, through glyconutrition and therapy for her brain.”

Though epilepsy may be a reoccurring issue, it is most often manageable. The real problem is mitochondrial disease. But even specter of that very serious disease does not compare to what Dawn said is the sovereignty of God.

“His sovereignty affects everything in our life if we seek it and if we are aware of it and we ask to know it,” she explained. “We were privileged to have been chosen by God to love and raise and help this child. And that’s what we see that we are doing. She is not ours, she is His. He trusted us enough to give her to us and we are honored to do that. It is only by His grace and strength and wisdom that we can walk this journey with her.

“We have people around the world to pray for her at a moment’s call. Through this prayer chain she is an inspiration to thousands of people. God gets the glory and the praise for what has happened in Abby’s life. For anyone struggling with a child with special needs, call on the sovereignty of the Lord.”

There are many diseases that continue to ravage humanity. Some have a reason while others remain a mystery. There are perhaps as many ways to respond in the wake of debilitating disease as there are people affected by them. For Don and Dawn Sullivan, for Abby, they found a treatment milieu that includes some things substantive and some things that defy the reasoning of medical science. A large part of Abby’s treatment flows from a wellspring that cannot be quantified or qualified and cannot be detected under an electron scanning microscope.

The Sullivans' concern with the vaccines Abby received was with the overall adverse effects, rather than any constituent components, such as thimerosal.

In the minds, actually the hearts, of Dawn and Don Sullivan, it is not impossible to defy the odds when the sovereignty of God is the prime factor in the equation.

“She is defying the odds every day,” Dawn reiterated. “She is a walking miracle. And compared to where she was, she should not even be here today.”

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Submitted by Question on Tue, 03/11/2008 - 10:53pm.

Amid all of the drama and misery in the news, this is such a beautiful and hopeful story. Smiling

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