October 26, 1994
I promised to post this letter:
October 26, 1994
Matthew has a rare genetic disorder called Junctional Epidermolysis Bullosa (E.B.) There is something missing in the molecular structure of his skin. Because of this, heat, friction and trauma to the skin causes blisters.
Under the category of "junctional" there are two types; mild and severe. Both involve similar symptoms on the outside of the body but with the most severe of the two, blisters form on the inside (esophagus, intestinal and urinary tract, eventually taking the child's life.) Symptoms with both types to be expected include dystrophy or permanent loss of the fingernails & toenails, blistering - leaving large raw areas, early loss of teeth and anemia.
The focus of our care will be on keeping Matthew from dehydration, secondary infections of the blistered areas, and reducing heat, friction and trauma to his body. (This includes keeping him cool, special clothes and gentle handling.) If a child with Junctional E.B. lives past the age of 1 year, the disorder sometimes lessens in severity. If blistering occurs on the inside, there is nothing the doctors can do.
We went to the Children's Hospital in Seattle this last weekend, one of the few research centers for this disorder. We were hoping that from their examination of Matthew they would be able to tell us which of the two types he has.
The results were not what we wanted. Matthew has the severe form of Junctional E.B. - the blisters that occur on the outside of his body are also on the inside. He has less than a 10% chance of surviving to one year of age (unless God decides to intervene). If he follows the typical pattern, the doctor says Matthew will die between 4 and 8 months of age. (He is two months old now.)
People ask us what we need. We need and covet your prayers and encouragement. We have much that lies before us and two things we need to remember. And those are: Romans 8:38 through 39: "For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God, which is in Christ Jesus our Lord." and Ephesians 6:12 which says: "For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places."
Please pray for Matthew, our relationship as husband and wife and our relationship with our children and our church family. We need to be reminded that God is in control and that all things will be done to his glory.
October 26, 1994
Matthew has a rare genetic disorder called Junctional Epidermolysis Bullosa (E.B.) There is something missing in the molecular structure of his skin. Because of this, heat, friction and trauma to the skin causes blisters.
Under the category of "junctional" there are two types; mild and severe. Both involve similar symptoms on the outside of the body but with the most severe of the two, blisters form on the inside (esophagus, intestinal and urinary tract, eventually taking the child's life.) Symptoms with both types to be expected include dystrophy or permanent loss of the fingernails & toenails, blistering - leaving large raw areas, early loss of teeth and anemia.
The focus of our care will be on keeping Matthew from dehydration, secondary infections of the blistered areas, and reducing heat, friction and trauma to his body. (This includes keeping him cool, special clothes and gentle handling.) If a child with Junctional E.B. lives past the age of 1 year, the disorder sometimes lessens in severity. If blistering occurs on the inside, there is nothing the doctors can do.
We went to the Children's Hospital in Seattle this last weekend, one of the few research centers for this disorder. We were hoping that from their examination of Matthew they would be able to tell us which of the two types he has.
The results were not what we wanted. Matthew has the severe form of Junctional E.B. - the blisters that occur on the outside of his body are also on the inside. He has less than a 10% chance of surviving to one year of age (unless God decides to intervene). If he follows the typical pattern, the doctor says Matthew will die between 4 and 8 months of age. (He is two months old now.)
People ask us what we need. We need and covet your prayers and encouragement. We have much that lies before us and two things we need to remember. And those are: Romans 8:38 through 39: "For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God, which is in Christ Jesus our Lord." and Ephesians 6:12 which says: "For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places."
Please pray for Matthew, our relationship as husband and wife and our relationship with our children and our church family. We need to be reminded that God is in control and that all things will be done to his glory.
posted by Glen at 10:31 PM
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