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Foundation for Mitochondrial Medicine

Father Cares for Entire Family Affected by Mitochondrial Disease

This blog post is written by Brandi Polatty about her husband, Chad.  It is to honor all of the dad’s out there doing everything they can to take care of their families.  Happy Early Father’s Day!

2014-04-20 11.31.36I’d heard through the years that when you met the right person to marry, you’d just know. That finally proved true for me in 1999, when I met the man that would become my husband, Chad. Engaged within four months, it had not taken me long to realize that not only would he be an incredible spouse to me, but he’d also make an extraordinary father to the children we had already started to name on days spent at the park dreaming about our future.

The road to parenthood wasn’t easy for us.  Unbeknownst to us, we both had an underlying mitochondrial disease. Yes, you read that right. Both of us. It seemed as soon as I would solve one medical issue, my body found another.

After we finally got pregnant with our first son, I heard people talk about how husbands slept all night, leaving the wives sleep deprived. That didn’t prove true for me. Chad would change diapers before handing our children to me to nurse. We also bottle fed so that he could give me more rest time.

During the first six years of their lives Chad was the primary source of income.

By 2010, we had all received the diagnosis of mitochondrial disease. In 2012, I began writing to try to supplement our income. It also provided an escape from the harsh reality that had become our life. Unfortunately, my body couldn’t keep up with the energy demand. I was constantly sick trying to be a full-time mother and writer. That’s when Chad stepped in and did what most men wouldn’t; he became Mr. Mom.

J.B. McGee, husband, Chad and their two boys, Jonah and Noah.

Chad with his wife and two boys

Chad let me sleep in every morning, always the one to get up with the kids and administer the many medications they take on a daily basis. He had a very strict routine he spent months developing, one he knew would work best for our children to allow them to thrive. While I know our children’s medical histories like the back of my hand, he brought a different perspective and angle to how best to care for them. Medications are administered over six times throughout the day. Feeding bags are refilled, discontinued, and started again, as both boys now have tubes. CPAP tanks are emptied and then filled again. Syringes must be washed so they are ready for preparation of the next day’s medications. Bath time and bed time routine consists of bed pads and pull-ups, making sure the oxygen concentrator tubing has been laid carefully through the hall so no one trips and connected to Noah’s machine.  And last, but not least, he is a barber and the nail clipper. He is the disciplinarian when needed, and the fun father that plays games with his kids as his hobby.

Over the last couple of years, we realized that I would always get sick if I spent the night when the kids are the in the hospital, so our procedure changed. I would go with the sick child to get them started, telling the nurses the medical history, and then Chad would come to relieve me, handling the rest.

The main symptoms of his mitochondrial disease are severe fatigue and myalgia. So, while doing all of these things selflessly to make sure that his family does not fall apart, he often wears an ice pack on his upper or lower back. Cutting the grass requires liters of Gatorade and many rest breaks. He rarely complains, and when asked if he’d rather work, go out with friends, or take care of his family, I am 100% sure he’d say be with his family.

There is nothing Chad wouldn’t do for his children or his family, despite his own limitations.  He is the epitome of the word father.  I’ve heard people say that if something seems too good to be true, then it probably is.  My husband, the father of my children, proves otherwise.

One cure, one timeline, simply does not exist but with your help we will move forward faster.

In the name of all of those with mitochondrial disease, join our effort in funding a cure.  Please make a donation today in honor or memory of a loved one.

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Tune in TONIGHT to hear Bestselling Author, J.B. McGee, on Survival Radio Christian Network

In September, Survival Radio Christian Network (SRCN) announced a new talk show to debut tonight at 8:30 pm.  SRCN described J.B. McGee’s show, The Light, as “designed to provide hope and encourage people to harness the power of their light.”  Tune in tonight to hear J.B. tell her story!

About J.B. McGee and her Family:
For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.

J.B. McGee, husband, Chad and their two boys, Jonah and Noah.

J.B. McGee, husband, Chad and their two boys, Jonah and Noah.

J.B McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.  Read more…

 

Listen to The Light with J.B. McGee Mondays at 8:30 p.m. EST on The Survival Radio Network. Tune in online at www.blogtalkradio.com/SRCN or by calling in to (347) 237-4648.

Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.

One Disease, Many Faces – J.B. McGee’s Family Story

For J. B. McGee’s family and many like it, things from the outside may seem perfectly fine and normal, but in reality, the day-to-day means daunting medications, extreme medical expenses, fatigue for the whole family, feeding tubes, ports, and CPAP’s, all of which are required to manage the entire family’s mitochondrial disease.

J.B. McGee, husband, Chad and their two boys, Jonah and Noah.

J.B. McGee, husband, Chad and their two boys, Jonah and Noah.

J.B McGee’s first child, Noah, was born in 2005, seemingly healthy. In 2006, after a year of constant infections, diagnosis of sleep apnea, and surgery to take out his adenoids, Noah needed to have another surgery called a Nissen Fundoplication and a feeding tube inserted to keep him from aspirating his reflux into his lungs. Within two weeks of that surgery, J.B. and her husband learned they were expecting Jonah.

Noah was diagnosed with gastrointestinal dysmotility, and despite the previous surgery, his sleep apnea persisted. He also had developmental delays, and J.B. and husband, Chad were positive that there had to be something more to these symptoms.

Soon after, J.B. and Chad realized that Jonah was following in his brother’s footsteps. Within six months, Jonah was also diagnosed with the same motility issues as Noah. Jonah also had sleep apnea and periodic limb movement disorder along with frequent wheezing and infections. He had numerous hospitalizations and by one year of age had already needed over twenty antibiotics. At last, a trip to see a new 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.

Muscle biopsies and genetic testing first for Noah, then for Jonah and later for mother and father, J.B. and Chad. For J.B. and Chad, diagnoses of mitochondrial disease became the explanations for chronic lifelong symptoms that never seemed to have a single point of origin. Throughout J.B.’s life, she has suffered from fatigue, overheating, frequent dehydration and infections. During her freshman year of college, J.B. was forced to take a medical leave for symptoms, now known to be related to mitochondrial disease. Chad has had a ten year history of fatigue, pain, and GI symptoms all of which stem from mitochondrial disease.

J.B McGee has channeled her energies into writing and in 2012 published her first novel. Your support of her work helps raise awareness for mitochondrial disease and fuel hopes for treatments and eventual cures. To learn more and donate in honor of J.B. McGee and her family, visit www.hopeflies.org.

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