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Family of 4 battling Mitochondrial Disease and struggling with the financial strains the chronic disease places on the them.

Mitochondrial Disease for the Entire Family
Chad, 32, Brandi, 30, Noah, 6, Jonah, 4

Financial toll of the disease is often overwhelming
Daily Medication is a heavy task
Pain for everyone
Cheer each other on every day!

Update: Jonah's testing in Boston revealed he does have dysmotility of the colon, but overall his motility looked pretty good. The doctors think his reason for not tolerating certain foods and dehydration is due to his symptoms from PDD-NOS (a type of autism). He had a feeding tube put in on February 16th and is recovering from his surgery. He suffered an infection last week, but seems to be on the mend.

The family found out they that the insurance isn't paying a couple of large claims and are responsible for over $11,000 in medical bills to their specialist, Medical Neurogenetics. Please share their story with your friends and family and if you feel led, please donate. No amount is too small.

Here's the shortest version of the past 30+ years possible - it's kind of long, but it's a heck of a story!

Brandi was born and known as a "colicy" child. She was failure to thrive, but otherwise heathly. Growing up, she suffered from fatigue, overheating, frequent dehydration and infections, but not enough to make someone really concerned. Outgoing and vivacious were terms that were often used to describe her. She played sports, earned a music scholarship to Converse College and succeeded in most things she set her mind to.

While home on medical leave her freshman year of college, for symptoms now known to be related to Mitochondrial Disease, girl meets boy.

Chad was charming, athletic, and smitten with Brandi. They soon were inseparable, and the jokes often were that he needed to be a doctor so he could take care of her.

Within their first year of marriage, Chad started feeling bad. He had a lot of upper back pain, GI problems, and fatigue. Most every person who was consulted blamed it on growing up and basically told him to suck it up and that it was just stress.

More health problems loomed for Brandi while trying to complete college and they were told it was now or never if they wanted a family. Within months, they were thrown into the infertility world and for two years prayed and tried to have a baby.

In 2004, they found out they were expecting their first boy, Noah. The pregnancy, like most everything else in Brandi's life medically, was difficult. Shots every day for 16 weeks to stay pregnant. Then shots 5 times a day to control blood sugar from diabetes, then shots to keep from having the baby too early. High blood pressure and pre-term labor followed.

On May 16, 2005, Noah was born and seemed to be healthy. Nursing was difficult. He was very gassy. Brandi wanted to breast feed and altered her diet to try to relieve his tummy troubles. In 2006, they would find after a rough year of constant infections, a diagnosis of sleep apnea, and surgery to take out his adenoids that he was aspirating. He needed to have another surgery called a Nissen Fundoplication and a G-tube inserted to keep him from aspirating his reflux into his lungs.

Within two weeks of that surgery, the Polatty's found out they were expecting Jonah. Again, the pregnancy was not easy. More shots, more bed rest, more pre-term labor (this time at 18 weeks) and this time while caring for a special needs child who continued to do poorly following his surgery.

In 2007, their first trip to Boston to see a motility specialist and the beginning of medical bills in excess of $20,000/year began.

Jonah was born shortly after and it didn't take long to see he was following in his brother's footsteps. In 2007, Jonah took his first plane ride at 6 months old to see Dr. Nurko in Boston. He believed he also had the same motility issues as Noah, but the goal would be to avoid any kind of GI surgery that could make it worse. This involved a lot of medications and an expensive formula that contained NO milk or soy proteins, Neocate.

Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations.

In late 2008, a trip to see a new GI doctor for the boys led to a referral to see Dr. John Shoffner and the investigation into a genetic condition called Mitochondrial Disease set full sail. Dr. Markowitz, the GI, said there was far too much family history on the mother's side to not seriously consider this genetic condition. He said the chances of having two boys with so many similarities was not likely without that of an underlying genetic condition.

Noah had a muscle biopsy in October, 2008, and for three months they waited to find out the results. On January, 2009, the news came that Noah did have mitochondrial disease. The next phase of testing started, which was to try to find its origin. By March, Jonah had his muscle biopsy to see if he also had the genetic condition.

In May, they found out that a mutation had been found in Noah that had never been seen before and could possible be a clue. Blood from Chad and Brandi was sent to Dr. Shoffner and in October, they found out that Jonah had a rare condition called Cerebral Folate Deficiency and that Brandi and Jonah both also had Mitochondrial Disease and the mutation that Noah had.

Another trip to Boston for just Brandi, Chad, and Noah in 2009 for 12 days led to more answers. Noah's colon had stopped working. He needed multiple medications to be able to just move his bowels. By this time, he was 100% tube fed through his intestines and has been ever since. He is currently getting 24 hour tube feeds (15 hours of formula to help him grow and keep him nourished and 9 hours of gatorade to keep him hydrated). Noah also started using a CPAP for his sleep apnea and hypoventilation (due to his muscle weakness due to the mitochondrial disease).

2009 was a very difficult year. Not only did diagnosis' come but so did the layoff of Chad's well paying job and the economic hardships just as the Polatty's medical bills were at an all time high.

2010 is when the Polattys realized the lack of awareness about the disease had finally taken its toll. The family was struggling to get basic services and Dr. Shoffner's staff urged the family to consider relocating to the Atlanta area as soon as possible. The family struggled most of 2010 with Jonah not responding well to treatment for his Cerebral Folate Deficiency and Noah continuing to struggle with his fatigue, muscle weakness, GI issues, and sleep quality.

After complications from surgery, Dr. Shoffner's staff told Brandi her current level of activity was unsustainable (working as a sales rep for AFLAC) and sent paperwork deeming her totally and permanently disabled.

In early 2011, the family was told that they really needed to relocate as soon as possible due to the concerns for Jonah. They thought they might need to do IVIG and IV fluids every 4-6 weeks and receive specialized care for his behavioral problems due to the mitochondrial disease and cerebral folate deficiency.

Less than one month, the family was now calling Buford, GA, HOME.

The boys have done well with the move, but soon Noah had to have a port placed and Jonah is now needing a G tube and port of his own.

In May, 2011, Chad underwent a muscle biopsy and work up with Dr. Shoffner due to some abnormal labs and his 10 year history of fatigue, pain, and gi symptoms.

In August, 2011, word came that Chad also has Mitochondrial Disease.

Another trip to Boston is needed as soon as possible and in January the family will have another $4000 out of pocket deductible that will probably be met in one day with the costs of the children's feeding tube supplies.

The family is struggling just to pay their basic cost of living. They have had to re-initiate the Medicaid process since relocating to Georgia and are also in the process of applying for SSI.

Please consider a donation to help offset the upcoming medical bills of the family in the coming months.

More than anything, your prayers are also greatly appreciated.

Special Needs Trust Funds were established in 2010 at a discounted rate by a local attorney, Buzz Rich, for Brandi, Noah and Jonah Polatty.

If you wish to mail a check to the trust accounts please make them payable to:

*Supplemental Needs Trust for the benefit of Noah A Polatty

*Supplemental Needs Trust for the benefit of Jonah D Polatty

*Special Needs Trust for the benefit of Brandi M Polatty

Mail to:
Chad Polatty, Trustee
3104 Victoria Park Lane
Buford, GA 30519
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