My Boys Are Growing Up!

Dean Boys 2009

I thought I would update everyone following my blog on the latest news regarding my family. It seems the Mitochondrial Disease is starting to really show it's ugly face. Sometimes I almost forget my boys are even sick. They go months with normal growth and no medical issues. But in the past few months we have been seeing doctors more then ever. I am trying to be better prepared for the future. When will the money run out? How can we get assistance when needed? Do we even qualify? Will the boys become progressively worse? Maxwell, our youngest child, who we thought was the non-mito kid in the family is now showing rapid health decline with emotional and physical weakness. He just started seeing an Occupational Therapist and suffers from epilepsy. Evan is starting to have gastric issues and has started treatment for irritation in his stomach. Casey, the oldest child, has epilepsy and extreme muscle weakness/fatigue. All three have Autistic Spectrum Traits .

With all this on our minds we are a happy family. Our kids are wonderful! My husband and I love each other deeply. But we have this cloud that seems to follow us. People always say to me; " How do you stay so up-beat all the time? I don't know how you do it! Most people wouldn't be able to handle what your going through." I am always short with a response. I don't know how to answer them. To be honest, this is my life and I have accepted it. I know it sounds hard to believe but besides the children's illnesseses I feel very lucky. I have awesome children. A loving husband who is a good dad. What more could a mom ask for? No ones life is perfect. As my grandma use to say, ' Everyone has a cross to carry, just some are heavier then others." As I have grown up these words have always stuck with me, subconsciously I suppose.

But I do have fears. Mostly about the things I have no control over. My husband has a very good secure job. Without the costs for health care etc. we would be doing well finacially. But slowly we are starting to struggle. Medical bills are starting to take their tole on our house hold imcome and I fear it will continue to get worse. We don't qaulify for any assistance. My husband makes too much money. They dont take into account your medical bills, gross income is all that is looked at. I read this article today that really touched me. Their story is more severe but it reminds me of where we could be headed. I will post the article below. This is what I fear most of all!

Rare genetic disorder attacking mother, three sons

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Family afflicted physically, financially

By Peggy O'Farrell The Cincinnati Enquirer

As his wife and two children have battled a life-threatening genetic illness, Rich Lowery has had plenty to worry about besides money. Mitochondrial disease is a rare genetic disease. One in 4,000 people are diagnosed with some form of it. The disease attacks the body's ability to convert food into energy. Ultimately, heart, brain or muscular systems can fail. For Kim Lowery and two sons, Tanner, 7, and Thomas, 3, the disease has been severe. Now, the Lowerys have discovered their oldest son, Tripp, 11, has it too.

With medical bills constantly pouring in, their debt already is huge. Mr. Lowery has a good job — he's an engineer at Fluor Daniel's Fernald site — and decent health insurance. But insurance doesn't cover many of the costs for treatment or the nutritional supplements Kim Lowery and the couple's three sons need. For the Lowerys, those costs add up to about $3,000 a month in medical expenses that insurance doesn't cover.

Friends and neighbors have helped out over the years through a variety of fund-raisers, and an account has been set up at Firstar Bank to help the family. But Mr. Lowery is looking for a second job to pay at least part of those bills. “I basically need to have a second income just to keep our heads above water,” he says.

Better off jobless

As hard as he works, some days Mr. Lowery can't help but think he might be better off if he quit his job, so his children, at least, can qualify for state and federal health benefits. He has applied for assistance through the state, and is awaiting word on whether the family will qualify for a medical waiver for help. But while he's working, he earns too much to qualify for federal assistance. His health insurance provider has set up a case manager for the family and authorized payment for services outside what most plans would cover.
But there's still a 20 percent co-payment to be met, expenses that aren't covered by health insurance and routine bills such as the mortgage, utilities and groceries.
Mr. Lowery estimates the family's medical debt at between $50,000 and $60,000, and it will continue to grow as his wife and children grow sicker. “I'm sure I would have lost my house a long time ago if it weren't for the good will of others,” he says.

Home is hospital

The disease is costing the family physically and emotionally too: Tanner has suffered several stroke-like episodes, and he can't go to school because of the disease. Both boys are routinely on oxygen and suffer seizures regularly. Mrs. Lowery, Tanner and Thomas require full-time nursing, and some days, more than one nurse is needed at the house. The Lowerys' home looks and sounds like a hospital. On days Tanner and Thomas are up and around, they're on oxygen lines. Monitors that indicate their breathing and heart rates beep routinely. When one of them stops breathing or suffers a seizure, the monitors beep louder. “Some days it's like an ICU in the living room,” says Georgina Schmits, one of the home health nurses who works with the family. Recently, the Lowerys' oldest son, Tripp, 11, began showing symptoms even though the family had originally thought he was free of the disease. “That was the final blow, along with our youngest son having his first seizure last November,” Mrs. Lowery says. “He had been pretty healthy up until then.” Dealing with disease Mrs. Lowery and Tanner were diagnosed with the disease shortly after Tanner's birth in 1994. Thomas was diagnosed with the disease when he was born. The outlook for Tanner is not good. For the others, the outcome is hard to predict because each family member's response will vary depending on how the disease progresses and which internal systems are affected. They can count on continuing to become weaker over time.
The supplements the Lowerys take — B vitamins, vitamins C and E and several amino acids — help make up for their bodies' inability to make energy. Mrs. Lowery recently returned from a trip to San Diego. She and her children are participating in research through the University of California. Scientists are mapping their DNA to try to find more effective treatments, and one day, a cure, for mitochondrial disease. “There's always a question: Is this research going to be in time for us?” Mrs. Lowery says. “But we hope that even if it's not in time for our family that it will be in time for other families.”

Battle tests faith

For the Lowerys, their battle with mitochondrial disease has been a test of faith, both spiritually and in their marriage. Mrs. Lowery says her husband is a saint, working non-stop to support a family he could lose at any moment to an incurable disease. “He comes home every day and takes care of four sick people, faced with the knowledge he might lose all of us,” she says. Mr. Lowery says he took a vow to take care of his family for better or worse, and he's living up to it. “I've said to my wife, this life is not about me any more. I'll surrender myself to work and service to my family, because it's an honor to serve my family like this.”