Help for Lucas: Cyclic Vomiting Syndrome
Donation protected
Lucas’s CVS Story:
Lucas is an 14 year old boy with cyclic vomiting syndrome (CVS). He was diagnosed in 2014 at the age of 6. Cyclic vomiting syndrome (CVS) is a rare disorder that results in Lucas having sudden, repeated attacks of severe nausea, vomiting, and exhaustion. During the episode Lucas is in a “conscious coma.” The symptoms are frightening to him and his family. They can be life-threatening if delayed treatment leads to severe dehydration. Each CVS episode lasts 3-5 days and requires in-patient hospitalization, IV fluids, a combination of medications to reduce nausea, induce sleep, and eventually end the episode. The episodes occur anywhere from several times a year to every month. Following a CVS episode, Lucas is free of symptoms and returns to his happy self.
Medical Testing:
Since 2014 to present, Lucas has undergone numerous tests: (brain ultrasounds, brain MRI, upper GI with contrast, ultrasound to rule out hernia, numerous GI x-rays, endoscopy, colonoscopy, EKGs, in addition to numerous blood draws for lab work ups. Yet the cause of his cyclic vomiting syndrome remains unknown. There is no definitive cure for cyclic vomiting syndrome.
Mitochondrial Medicine:
In an ongoing quest to help Lucas, his family discovered that based on current research, changes in mitochondrial DNA may cause or contribute to the development of the CVS disorder. Having been diagnosed with CVS is highly suggestive of an underlying mitochondrial dysfunction. Lucas exhibits signs of having a component of an underlying mitochondrial dysfunction that affect his activities of daily living at school and home.
In May 2019, Lucas consulted with Dr. Richard Boles, a medical geneticist and a pediatrician who specializes in mitochondrial medicine, functional disease (including cyclic vomiting syndrome.) Using the genetic test results, Dr. Boles outlined an individualized treatment plan specific for Lucas.
Lucas continues under the care of Dr. Boles, who oversees his medication therapy, specialized supplements and CVS treatment as it relates to mitochondrial medicine. Unfortunately, Dr. Boles is out of network, requiring Lucas's family to pay out of pocket for his services.
Financial Hardship:
Lucas and his family need financial support, in order to provide Lucas with the ongoing specialized medical care and treatment he needs to manage his CVS.
Lucas's out of pocket medical expenses far exceed his family's ability to pay. His medical insurance does not cover the ongoing specialized treatment related to mitochondrial and molecular medicine for CVS. In addition, it does not cover the chiropractic and naturopathic treatment Lucas receives to help his autonomic nervous system function properly.
Lucas and his family need funds now.
Hope Starts Here:
Lucas and his family are forever grateful to family and friends that have generously donated to his campaign. We remain hopeful that the specialized medical treatment Lucas receives from his team of highly trained healthcare professionals will reduce reoccurring CVS episodes and improve Lucas's quality of life.
Educate, Advocate & Research:
Mitochondrial - Medicine Richard Boles, MD
Cyclic Vomiting Syndrome Association
Lucas is an 14 year old boy with cyclic vomiting syndrome (CVS). He was diagnosed in 2014 at the age of 6. Cyclic vomiting syndrome (CVS) is a rare disorder that results in Lucas having sudden, repeated attacks of severe nausea, vomiting, and exhaustion. During the episode Lucas is in a “conscious coma.” The symptoms are frightening to him and his family. They can be life-threatening if delayed treatment leads to severe dehydration. Each CVS episode lasts 3-5 days and requires in-patient hospitalization, IV fluids, a combination of medications to reduce nausea, induce sleep, and eventually end the episode. The episodes occur anywhere from several times a year to every month. Following a CVS episode, Lucas is free of symptoms and returns to his happy self.
Medical Testing:
Since 2014 to present, Lucas has undergone numerous tests: (brain ultrasounds, brain MRI, upper GI with contrast, ultrasound to rule out hernia, numerous GI x-rays, endoscopy, colonoscopy, EKGs, in addition to numerous blood draws for lab work ups. Yet the cause of his cyclic vomiting syndrome remains unknown. There is no definitive cure for cyclic vomiting syndrome.
Mitochondrial Medicine:
In an ongoing quest to help Lucas, his family discovered that based on current research, changes in mitochondrial DNA may cause or contribute to the development of the CVS disorder. Having been diagnosed with CVS is highly suggestive of an underlying mitochondrial dysfunction. Lucas exhibits signs of having a component of an underlying mitochondrial dysfunction that affect his activities of daily living at school and home.
In May 2019, Lucas consulted with Dr. Richard Boles, a medical geneticist and a pediatrician who specializes in mitochondrial medicine, functional disease (including cyclic vomiting syndrome.) Using the genetic test results, Dr. Boles outlined an individualized treatment plan specific for Lucas.
Lucas continues under the care of Dr. Boles, who oversees his medication therapy, specialized supplements and CVS treatment as it relates to mitochondrial medicine. Unfortunately, Dr. Boles is out of network, requiring Lucas's family to pay out of pocket for his services.
Financial Hardship:
Lucas and his family need financial support, in order to provide Lucas with the ongoing specialized medical care and treatment he needs to manage his CVS.
Lucas's out of pocket medical expenses far exceed his family's ability to pay. His medical insurance does not cover the ongoing specialized treatment related to mitochondrial and molecular medicine for CVS. In addition, it does not cover the chiropractic and naturopathic treatment Lucas receives to help his autonomic nervous system function properly.
Lucas and his family need funds now.
Hope Starts Here:
Lucas and his family are forever grateful to family and friends that have generously donated to his campaign. We remain hopeful that the specialized medical treatment Lucas receives from his team of highly trained healthcare professionals will reduce reoccurring CVS episodes and improve Lucas's quality of life.
Educate, Advocate & Research:
Mitochondrial - Medicine Richard Boles, MD
Cyclic Vomiting Syndrome Association
Organizer
Jewel Mohr
Organizer
Rosemont, CA