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This fundraiser ended on 03/15/11

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Mitochondrial Disease causes an energy crisis in the body. People with "Mito" suffer from debilitating fatigue, muscle weakness, and many other symptoms. The money raised will be split between the Truett and Polatty families for medical expenses.

Two friends are teaming up to make a difference for their families and others.

Ashley Truett and Brandi Polatty were connected through a parent chat room for kids with special needs in May, 2006.  Little did they know just how much they had in common.

Instantly friends, they realized their children and even themselves had a lot in common.  Her oldest child had some personality traits similar to Brandi's only son at the time.  These traits are present in children with ADHD and Autism Spectrum Disorders. 

Ashely's youngest daughter also shared some symptoms with Brandi's only son at the time.  Her stomach didn't work well and most times not at all.  Her intestines have something called Pseudo-Obstruction.

It wasn't long before Brandi started seeing Ashley's pediatrician's office trying to get answers for Noah who was aspirating, had sleep apnea, and severe reflux.  Noah was also not talking well.

This doctor immediately admitted him and he had surgery four days later.  After weeks in the hospital from complications, he was sent home completely tube fed.  Ashley was such a rock and source of support for Brandi during this time as she had been down this road three times before with each of her girls.

Five days after coming home it was Ashley that encouraged Brandi to go take a pregnancy test because she was positive that she was pregnant.  She was right!  She was the first person to hear the news.  The baby was expected on Brandi's husband's birthday.  They would soon find out it was to be another boy.

During the pregnancy, Brandi again suffered a lot of complications.  Trying to take care of herself, she found herself spending many nights in hospitals for herself or trying to get more answers for Noah, who seemed to be on a steady decline in health.

One month before giving birth, they traveled to Boston, MA, to see a doctor that Ashley had seen with her youngest daughter.  A test called an antro-duodenal manometry was performed as well as endoscopies, labs, and other tests as a part of a motility workup.  The doctor told Brandi and Chad that Noah had some things that pointed to mitochondrial disease, but he really wasn't sure and we would know if things continued to progress or if the second child was born with similar issues.  He said without a genetic condition it was in the 90% range that the second child would be perfectly healthy.  The diagnosis that was given to the Polatty's for their son was Pseudo-Obstruction.

Brandi gave birth in March, 2006.  The baby at first appeared fine, but quickly they realized how sleepy he was and how difficult it was for him to feed.  He had failure to thrive by two weeks and put on reflux medications.  He was put on a special formula at 2 months after a test showed his stomach was also slow to move food through, like his brother and Ashley's girls. 

He also had some life threatening events where he stopped breathing, so he was put on an apnea monitor until he was six months old.  At six months old, they traveled again to Boston with the boys and saw the same doctor, who suspected that Jonah had slow motility like Noah and his mother, but thought he was going to be ok if he could keep from aspirating or having life threatening events from the reflux that is cause by the stomach emptying too slow.

It wasn't until August 2008, that the Polatty's visited a new GI to care for the boys locally in Greenville, SC (3 hours from home).  The doctor asked if they had ever been tested for mitochondrial disease.  He said the history just "screamed mitochondrial disease".  He made a referral that would change their lives and the life of Ashley's family as well.

In October, 2008, Noah underwent a fresh muscle biopsy, spinal tap, battery of labs, and a resting metabolic rate test.  It would be three months before they would know the results.  The doctor told them he suspected a genetic condition.  He also told them he further suspected that Noah was on the autistic spectrum, just like Brandi and Ashley had suspected for so long.

In December, 2008, Noah was diagnosed with PDD-NOS, an autsitc spectrum disorder.

In January, 2009, Noah's test results came back and showed that he had a probable mitochondrial disease.  The test results indicated the need for further testing and DNA sequencing was started.  

By March, 2009, Jonah was sent for his own muscle biopsy, spinal tap, resting metabolic test, and labs. 

In May, 2009, the spinal tap results showed that Jonah has a problem with getting enough folate to his brain.  This can cause devestating symptoms.  He was immediately put on a medication that is very successful in treating this disorder.  But, Noah's sequencing had also found a novel mutation in his transfer RNA.  This mutation had never been seen before and they needed the blood of Noah's parents.

By October, 2009, the Polatty's received news that the mutation was found in Noah, Jonah, and Brandi's blood.  The doctor called and told them that they all three had a probable mitochondrial disease.  The only way to get a definitive diagnosis is through a mutation that has been found to be pathogenic and the mutation hasn't been seen enough to determine pathogenicty.

It wasn't long after this that Ashley's oldest also received a diagnosis on the Autistic Spectrum--Asperger's and ADHD. 

Ashley's youngest daughter had been fed through her veins using something called TPN.  She had suffered a very critical and life threatening MRSA infection sending her into DIC, a form of septic shock.  Doctor's abbreviate this as "Death is Coming" because almost always the patient passes away by the time they figure out what is causing the internal bleeding.  In Emily Grace's case, the doctors were able to save her life.  Months later, her broviac (the line used to feed her the TPN) was dislodged and in her chest wall.  Requiring emergency care, she was hopitalized and the line was removed.  It was during this time that her pediatrician told the Truett family they would make a referral for a genetic workup.  

Knowing the similarities in the families, it would be very surprising if the Truett family girls and Ashley do not have mitochondrial disease.

Regardless, the many trips to Boston, Charleston, Greenville, Atlanta, etc have all added up for the families and they are in need of financial support to help battle the thousands of dollars in medical expenses they face each year.  The Polatty's had over $17,000 in medical expenses last year that they had to pay out of pocket. 

As of right now, this fundraiser is for these two families, but Brandi and Ashley would like to expand their efforts to form a non-profit group to help other families just like theirs who are battling rare diseases with the medical expenses associated with having a chronic and life-threatening disease.

A parent should never have to choose whether they can pay the mortgage or for a life-altering medication for their child.

It is their hope to make their own situation into good by sharing their stories of a connection only God could form and using this opportunity to raise awareness and to provide for their families and others.

Thank you for taking your time to read this and for your support!!

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