Mito Fighter Dani

Mito Fighter Dani

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Mito Fighter Dani

In this corner weighing in at 25 lbs is our challenger Little Miss Danielle Magerfleisch.

She may be tiny but she is tough.

In this corner is the reigning champion who is out to steal energy from all of its victims: Mitochondria Disease.

Mitochondria are the “energy powerhouses” of most of your cells. When disease exists, body systems start to fail. This process can repeat throughout the whole body. Cell death occurs because the body is unable to generate the energy to sustain life. At this time, there is no cure.

Dani's Story

Danielle was born 10/25/2007 by C-section at 38 weeks gestation. Perfect, pink and healthy in every way. She was strong, great sucking ability, and could amazingly see across the room shortly after birth. The following is a brief summary of the journey she has been on. It has many twists and turns but it is full of hope. Before we begin, we want to emphasize that there is hope if you seek the truth and the path towards healing!

Never let any human being tell you that hope looks grim, prepare for the worst, it won’t get any better, or there is nothing more that can be done…

No human being whether MD,DO PhD, minister etc. can really tell you that. It is in God’s hands. You must pray for guidance to find the healing path. The truth, the path, the light to lead you to being healed.

It is our family’s belief that God would not give us an imperfect body. Our bodies become imperfect by the toxins that us humans have put on our earth. We need to seek the truth and the healing path to correct the mess humans have made to damage our bodies. Please join us in following the journey. It is our desire in creating this web site to bring hope to the mito community as well as others who have loved ones struggling with Alzheimer’s, Parkinson’s, Chronic Fatigue Syndrome, and possibly Lupus, Rheumatoid Arthritis, and some cancers. All of these listed diseases have a certain amount of mitochondrial dysfunction associated with them.

The Journey so far:

Born October 25, 2007 (denied Hepatitis Injection at birth)

Birth – 6 months

• At one week, spit up blood and was very stiff at Wal-Mart (later discovered she had a seizure) X-ray revealed clear lungs, dismissed as “reflux”. At one month, vomited blood while in her crib. Transported to Scottish Rite Children’s Hospital in Atlanta. During this 2-week hospital stay a CT scan revealed a “mass” that ruptured in the upper lobe of the right lung. Mom and a nurse witnessed a seizure during this visit. Danielle was placed on Phenobarbital after EEG confirmed the seizures.

• Dec. ‘07-Jan. ‘08 progressing nicely. No problems with “Phenobarb”. Smiling, interacting, great head strength. She was well enough for her first vaccinations. Vaccines given 01/08. The next month went well. Bearing weight on legs with help. She was a happy baby. “Phenobarb” controlling seizures well. Lungs looked great, no visible signs of mass anymore.

• Late 02/08 Behind on vaccines, second set given including Hep B. Within 4 days all of our lives changed forever. Seizures intensified. Convulsive, Dani turned blue. Seizures were very long. The hospital increased “Pheno” and we were sent home. Seizures increased. Admitted to hospital again 03/03/08 for another 2 week stay in hospital. 40+ seizures during first week. Dilantin, Keppra and Carnitor were added to help control Dani’s seizures.

• Drugged Dani returned home. Gone were the smiles, weight bearing, and eye contact. She was distant and started falling behind on milestones.

Age 7-12 months

Two major hospital stays, changing and increasing seizure meds. Danielle spent her 1st birthday in the hospital. She lost the ability to eat and suck from her bottle. A NG (nasogastric) tube was inserted for nutrition. On 11/03/2008 the muscle biopsy diagnosis came. Mitochondrial Encephalomyopathy Complex 1 defect (at least). After 24 hours of crying, I hold Danielle. She looks deep in my soul. I feel God’s presence and a sense of peace. We pray for God to show us the path.

Age 13-18 months

It took 5 weeks to re-teach Dani to suck from a bottle and eat pureed foods. We start making all of her food, much of it organic. We use the blender to make all of her food. We implement a Casein Free/Gluten Free/Soy Free diet. We create a special drink for her with rice milk, carrot juice, brown rice protein and vitamins. We avoid iron and copper. Supplemental iron is contraindicated for mito patients and supplemental copper in contraindicated in autistic children. Dani starts “babbling” again and putting her hand in her mouth. She is much more alert.

Our 1st non-medically approved test, a hair analysis, reveals high levels of antimony, silver, barium, and off the chart level of aluminum. Aluminum is prevalent in our society. It is used extensively in G tube solutions (TEN), IV’s dyes, anacids, etc. Medical doctors disregard this test. Ironically, forensic medicine uses hair analysis quite a bit. We start an at home detox program. Seizures are increasing. Her medications are increased. She grows more distant. We did not realize her seizure medication has lactose in it. We are trying to avoid all milk derivatives.

We suspect some food allergies. IGG allergies are “intolerances”. These are delayed responses like headache, muscle aches, brain fog, congestion, GI issues, and can trigger seizures if epilepsy is a diagnosis. They are different than IGE allergies which are the common rash, swelling, itching etc. We realize we have changed too many things too quickly. We are not focusing on God’s path because healing is not happening fast enough. We are making a mess.

Age 19mos-2 years

We start over with the basic vitamins and supplements. We use COQ10 as our antioxidant, which is recommended for mitochondria disease patients.

Danielle develops a “sensitive” area to the left of her upper spine. When this area is patted, she blinks wildly, stiffens, and falls into a seizure. An MRI of the brain and spine as well as a video EEG are ordered and reveal nothing. This area has been dismissed as a “sensory” issue. The hospital was very accommodating to us in our request to avoid aluminum and other metal exposure from IV’s as much as possible.

We learn about the ketogenic diet that helps with seizures. It is not very nutritious for a mito patient. Mito patients cannot fast either. We create our own “modified ketogenic diet” to try to gain better natural control of her seizures. The ALCAT allergy test (IGG allergies) reveals something surprising. We are feeding her many foods her body has intolerances to including many types of fish, oregano, tomatoes and cherries. She is intolerant to some environmental chemicals as well especially ethylene glycol and toluene. We need to eliminate as much as we can.

We order a stool analysis, copper/zinc ratio, Organic Acid test, and urinary porphyrins tests. These reveal too much bad gut bacteria, not enough good gut bacteria, yeast in her intestinal lining (her mouth too), Lactose malabsorption (she is allergic to whey too), not enough short chain fatty acids, high oxalates, and confirmation of aluminum and possibly lead and mercury in her urinary porphyrins. We know from research the gut must be in good shape before healing and detox can be accomplished. We have started a new probiotic, aloe for the gut, completed a course of Diflucan, and detox minerals from New Beginnings Nutritionals, which are recommended by the Great Plains Lab. This has been the only place we have found a casein free, soy free, gluten free, yeast free, dye free, sweetener free, no copper, no iron supplement with care to avoid preservatives and salycilates. We have recently found a “DAN” (Defeat Autism Now) doctor who will try to help us unblock Danielle’s blocked pathways to allow her body to naturally detox. She will assist us with detox if necessary.

The amino acid test reveals elevated glutamate levels(excitotoxin) unusual high glycine level and high beta alanine. We need to tweak the diet again. The lab recommends low protein and low purine/pyrimidines. Beta alanine can be neurotoxic in the brain and spinal cord. Normally beta alanine converts to alpha ketoglutaric with the help of B6. This is not happening with Danielle. She is on 200mg of B6 per day but her testing indicates deficiency. We change her to P5P active form B6. Improvement is noticible right away. Her body does not appear to be able to convert B6 to active form. Interesting. Also we discover that all of her neurotransmitters are elevated and her morning cortisol is very low. We will do more testing in Dec. then if necessary, push to be worked in at a pediatric endocrinologist. Out of pocket expense for the “not medically necessary” testing is $1700.00 at this time. How can this not be medically necessary? At this moment, Danielle’s seizures have decreased significantly. She is down to just one seizure medication. We are grateful to the Lord.

Age 2-2.5

At 27 months we have finally started a heavy metal detoxification program. We have waited so long to get to the place to try this. The right supplements, diet and seizure control. As of the end of Jan 2010, we have done 3 rounds of DMSA topical and she is using Glutathione lotion. The biggest improvement so far is in Danielle's vision. She is seeing better than at anytime since her vaccine injury. She is a little more verbal and using her hands more. We have still not seen any improvement in using her arm strength. Her seizures increase a bit while on DMSA but they reduce when she completes the round. We expected that. We are still trying hard to come up with something to increase her strength. We are in such awe in how God is working in Danielle's life. She is progressing. We are so thankful to Jesus.

Age 3

This 6 months has been a huge roller coster ride. We have tried many new things with the help of an integrated medical facility in Atlanta. We have tried 4 months of Magnesium malate to lower aluminum, we tried 4 months of the hyperbaric oxygen chamber, we are tweaking her diet again as she is showing more signs of carbohydrate malabsorption. Right before her birthday in Oct, things started to decline. Her lactic acid is up, her urine PH is becoming more acidic, seizures have increased. We are going to back down on her newer therapies until we figure out what is not working.

Age 3 1/2

Less seizures but a bit weaker. Undergoing detox for her vaccines. Finally gaining weight. God has been faithful in this healing journey and He will continue to lead our path. Satan will not steal our joy or hope. Praise to you Lord Jesus!
Age 4-4.5 Very turbulent time. In Dec. Danielle lost all of the weight she had gained. Things looked very grim. Through prayer God revealed to us that Danielle was having such difficulty digesting her food, we were led to the IBS diet which started to work immediately. By Feb she was back up to her weight from last summer, was able to go to the bathroom on her on again, and her seizures were back down to 1 per month. The realization that many of her problems truly do come from her stomach, her mother Age decided to alternate her vitamins to half every other day to give her stomach a break. We had to cut many foods like beans and nuts. 2 very in depth DNA reports have come back ($15,000 test) although a number of things (DNA variants) have been found, nothing points to disease at this time. Danielle's DNA and other children with mito are being studied in hopes to find a cure. Danielle is a true LIGHT for all. At this moment, Danielle can make small noises to communicate, suck on her hand, hold a toy for a short while, and eat ALOT! She cannot sit up, smile, or rollover. But blessings abound, she is doing very well as of the end of Feb 2012. Praise to you Lord!

Please continue to follow us on this journey with the truth and the healing path being revealed, and God leading the way. The journey will be updated every few months.

If you have any ideas, comments, prayer requests, or just need to vent, please feel free to
contact us at OslandGA@aol.com. We will check our email at least twice per week.

Thank you and God Bless you.

Disclaimer: Please realize that we, the Magerfleisch/Osland family are not medical doctors or nurses. This website expresses the opinions and personal research pertaining to our family circumstances. This website is not intended to dispense medical advice for anyone else. This website is solely intended to bring hope and uplifting words to families dealing with disease.