Everyday People Just Shouldn´t Have This Set of Problems
Alan Guinn
March 25, 2009
Bet you´ve never heard of Alpha 1-Antitrypsin Deficiency. If you have, you know that it is a devastating and debilitating disease centered in the lungs and/or the liver. If you haven´t heard of it, count yourself lucky. If you´re lucky, you may not even know what the Liver does. Just that you have one, and it works. Others aren´t so lucky.
Joseph Heller, in the book Catch 22, developed a characteristic of his chief protagonist, Yossarian, by always faking a liver disorder because-- in his words--- "no one knows that much about the Liver or how it works."
Today, unfortunately, for Sophia and Tatum Boyer, they are learning—at very young ages---what the liver is all about, and what Alpha 1-Antitrypsin Deficiency is---and the effect it can have on their lives.
Sophia Reese Boyer, born 09/12/2005 was diagnosed with Alpha-1 (ZZ) in Dec. 2005, and had a liver transplant 12/24/06 at Seattle Children's Hospital. She continues to battle rejection of her new liver, but is currently stable with the help of 4 medications (down from 10).
Tatum Josephine Boyer, born 05/17/2004 was diagnosed with Alpha-1 (ZZ) in Feb. 2006, and is currently stage 2 (of 4) liver failure. Tatum's disease is a slower progression than Sophia's, and so the family must just wait for her liver to fail in order to start the transplant process.
Abigail Katherine Boyer, born 03/03/2003 is an Alpha-1 carrier (MZ) but currently has no signs of the disease. Everett Woodson, born 03/18/1997 is an Alpha-1 carrier (MZ) but currently has no signs of the disease. Everett is currently living in Las Vegas with his father.
So what is Alpha 1-Antitrypsin Deficiency?
The Alpha One Foundation defines the disease as a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children & adults. The Foundation says that Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver.
From looking at the Boyer family photograph at http://alpha1bits.info/, you´d think—as their family theme song, "Everyday People" says, that they are the run of the mill, average American family. Mom Laura, Dad Brian, a passel of kids that are cute, sweet, ready to grow up and take their places in society. Only they aren´t. The family is hundreds of thousands of dollars in debt and their investment in real estate and construction is losing dollars daily. That doesn´t help Sophia and Tatum, who need thousands of dollars worth of medication monthly.
There is good news. Sophia is three, and she just had a six month check up. Her new liver continues to grow. That´s the good news. The Boyer´s have bills for Sophia currently exceeding $2 Million. That´s bad enough.
But, there is even darker news than the financial side. Tatum´s liver now appears to be beginning to fail—she´s in Stage 2 of 4…and she will also need a transplant.
So how did this happen to an All-American family from Depoe Bay, Oregon—nestled on the craggy, West Coast of the USA? If the Mom and Dad haven´t been tested—and they hadn´t-- there´s no indication of illness until the child turns up sick. And not just sick, but deathly ill.
If these are your kids, what do you do? What can you say to them?
Here´s what you can do to help the Boyers. You thank God every night that you aren´t faced with this challenge and you pray for the Boyer family to have the strength to carry on. Or, you go to their website and make a donation to help them defray the costs. Do both. Visit http://alpha1bits.info/Home_Page.php. Make a decision to donate to one of the best causes you´ll ever find. And pray tonight for Sophia and Tatum and the whole family…and, while you´re at it, give thanks to God that your children are ok.
Joseph Heller, in the book Catch 22, developed a characteristic of his chief protagonist, Yossarian, by always faking a liver disorder because-- in his words--- "no one knows that much about the Liver or how it works."
Today, unfortunately, for Sophia and Tatum Boyer, they are learning—at very young ages---what the liver is all about, and what Alpha 1-Antitrypsin Deficiency is---and the effect it can have on their lives.
Sophia Reese Boyer, born 09/12/2005 was diagnosed with Alpha-1 (ZZ) in Dec. 2005, and had a liver transplant 12/24/06 at Seattle Children's Hospital. She continues to battle rejection of her new liver, but is currently stable with the help of 4 medications (down from 10).
Tatum Josephine Boyer, born 05/17/2004 was diagnosed with Alpha-1 (ZZ) in Feb. 2006, and is currently stage 2 (of 4) liver failure. Tatum's disease is a slower progression than Sophia's, and so the family must just wait for her liver to fail in order to start the transplant process.
Abigail Katherine Boyer, born 03/03/2003 is an Alpha-1 carrier (MZ) but currently has no signs of the disease. Everett Woodson, born 03/18/1997 is an Alpha-1 carrier (MZ) but currently has no signs of the disease. Everett is currently living in Las Vegas with his father.
So what is Alpha 1-Antitrypsin Deficiency?
The Alpha One Foundation defines the disease as a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children & adults. The Foundation says that Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver.
From looking at the Boyer family photograph at http://alpha1bits.info/, you´d think—as their family theme song, "Everyday People" says, that they are the run of the mill, average American family. Mom Laura, Dad Brian, a passel of kids that are cute, sweet, ready to grow up and take their places in society. Only they aren´t. The family is hundreds of thousands of dollars in debt and their investment in real estate and construction is losing dollars daily. That doesn´t help Sophia and Tatum, who need thousands of dollars worth of medication monthly.
There is good news. Sophia is three, and she just had a six month check up. Her new liver continues to grow. That´s the good news. The Boyer´s have bills for Sophia currently exceeding $2 Million. That´s bad enough.
But, there is even darker news than the financial side. Tatum´s liver now appears to be beginning to fail—she´s in Stage 2 of 4…and she will also need a transplant.
So how did this happen to an All-American family from Depoe Bay, Oregon—nestled on the craggy, West Coast of the USA? If the Mom and Dad haven´t been tested—and they hadn´t-- there´s no indication of illness until the child turns up sick. And not just sick, but deathly ill.
If these are your kids, what do you do? What can you say to them?
Here´s what you can do to help the Boyers. You thank God every night that you aren´t faced with this challenge and you pray for the Boyer family to have the strength to carry on. Or, you go to their website and make a donation to help them defray the costs. Do both. Visit http://alpha1bits.info/Home_Page.php. Make a decision to donate to one of the best causes you´ll ever find. And pray tonight for Sophia and Tatum and the whole family…and, while you´re at it, give thanks to God that your children are ok.
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