Although Randi was born with some obvious birth defects, doctors assured her family that she was perfectly healthy. Randi’s younger sister and brother were also dubbed healthy at birth. However, all three siblings began exhibiting multiple unexplainable health issues which none of the many specialists could alleviate.
By the time Randi turned twelve, she could not swallow her own saliva. She and her sisters were placed on a special amino acid based formula. The health improvements were miraculous. Unfortunately, this did not last long. As the siblings got older a host of new problems plagued them. At ages 17, 18 and 19 they were all diagnosed with a mitochondrial disease.
By the time Randi turned twelve, she could not swallow her own saliva. She and her sisters were placed on a special amino acid based formula. The health improvements were miraculous. Unfortunately, this did not last long. As the siblings got older a host of new problems plagued them. At ages 17, 18 and 19 they were all diagnosed with a mitochondrial disease.
Randi Evans
Mitochondria are found in nearly every cell in the body, so the disease is multi-faceted and can affect all parts of the body. Very few doctors know anything about mitochondrial diseases. Because of the lack of knowledge in the medical community, many individuals are misdiagnosed, or undiagnosed. Most treatments are unaffordable as they are not covered by insurance, Medicare or Medicaid.
Randi’s mom says, “It took our family six years after receiving a diagnosis to obtain proof of mitochondrial disease from a muscle biopsy. Out lives have been spent struggling with this devastating, debilitating disease.”
Randi’s mom, Catherine, recently published a book through Lulu.com entitled, “My Children and Mito” to help inform the public and raise much needed awareness of Mitochondrial diseases.
Randi is the most severely affected member of the family. She suffers daily with multiple areas of pain. She is legally blind and was born with severe ptosis and immune deficiencies which cause her chronic infections. She has weakness, spasms and cramping in her muscles. Her central nervous system as well as her peripheral nerves are affected causing neuropathies, dysfunction of her autonomic nervous system leading to syncope, low blood pressure, tachycardia, temperature regulation problems, severe dizziness and associated nausea and vomiting. Randi currently takes over two dozen medications per day. Since Randi’s stomach stopped working a year ago she receives all nutrition and medication through a J-tube. Nothing is taken orally.
“Everyday is a struggle for Randi, but her love of art and music help her cope. She expresses herself with the drawings and poetry she creates. Finding Angel Boy Art gives Randi a wonderful opportunity to share her unique art with others.” said her mother.
Randi’s mom says, “It took our family six years after receiving a diagnosis to obtain proof of mitochondrial disease from a muscle biopsy. Out lives have been spent struggling with this devastating, debilitating disease.”
Randi’s mom, Catherine, recently published a book through Lulu.com entitled, “My Children and Mito” to help inform the public and raise much needed awareness of Mitochondrial diseases.
Randi is the most severely affected member of the family. She suffers daily with multiple areas of pain. She is legally blind and was born with severe ptosis and immune deficiencies which cause her chronic infections. She has weakness, spasms and cramping in her muscles. Her central nervous system as well as her peripheral nerves are affected causing neuropathies, dysfunction of her autonomic nervous system leading to syncope, low blood pressure, tachycardia, temperature regulation problems, severe dizziness and associated nausea and vomiting. Randi currently takes over two dozen medications per day. Since Randi’s stomach stopped working a year ago she receives all nutrition and medication through a J-tube. Nothing is taken orally.
“Everyday is a struggle for Randi, but her love of art and music help her cope. She expresses herself with the drawings and poetry she creates. Finding Angel Boy Art gives Randi a wonderful opportunity to share her unique art with others.” said her mother.
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Angel Boy Art
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Special Art by Special Young Artists
