Team Devin! Help us find answers!
Donation protected
Devin is my youngest child. He's 17 and has been suffering for many years with medical problems. At 11, he was diagnosed with Crohns Disease and after years of treatments with no success..we were sent to a Geneticist and he was then diagnosed with Mitochondrial Disease. (Mitochondrial Disease is described in full at the bottom of this page). Devin has gone from an athlete to homebound over the years. Due to Mito taking all of his energy, he's given up basketball....his all time favorite sport! He has missed many years of being with his classmates in school and that is his greatest desire to graduate on stage in 2016.
Devin is unable to enjoy things that we take for granted. His energy level is too low to go places without getting ill. Fainting (syncope), vision loss, and weakness keep him from leaving the house on most days which is also why he can't go to school, travel, hang out with friends, run errands, etc.
Each day Devin takes many different medications, eats hourly to keep up his caloric intake because he does not absorb nutrients, and has learned how to manage each symptom as they come.
As of recently, he is having regular infusions done at Ochsner.
Mitochondrial Disease does not have a cure! There are no two people just alike. I also have Mitochondrial Disease but we have different symptoms. My desire is for us to find out every possible way to help my son so that he can live a normal life! We've exhausted all areas of testing except one....Whole Exome Sequencing. The test is not covered by Devin's medicaid insurance. The test is $10,000 out of pocket and as a single parent, I cannot pay for it. We know that for one person that is a lot but for many people to come together with any donation it is possible. There is only a 25% chance to find the answers we need with this testing...but Devin is worth even a 1% chance!
Please help me find answers for my son. As a family...we are desperate to help him.
Mitochondria exist in every cell except red blood cells, and generate A.T.P.—a form of chemical energy that powers cellular function. At its simplest, mitochondrial disease causes the degeneration of cellular energy production, which can lead to disastrous dysfunction in any of the body’s major systems. According to the U.M.D.F., mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth.
Because we have mitochondria in almost every cell in our bodies, M.D. isn’t a single disease, but a spectrum—an umbrella term for genetic mutations that can manifest across different systems in unpredictable ways. There are over 200 known variations of M.D., and many more that remain unknown. According to U.M.D.F.’s online resource, symptoms range from developmental delays in the brain to vision loss to severe muscle weakness to liver failure. A runner at the bottom of U.M.D.F.’s symptom catalogue reads, “Think mitochondrial disease when three or more organ systems are involved.”
If you haven’t heard of mitochondrial disease, you’re not alone. In the United States, a rare disease is defined as one that affects less than 200,000 people according to the National Institutes of Health. Mitochondrial disease is commonly acknowledged to be one of the most complex and least understood of the rare diseases. U.M.D.F. estimates that each year, 1,000 to 4,000 children in the U.S. are born with M.D. Accounting for the many people who are misdiagnosed or undiagnosed, Yeske estimates that there are about 30,000 people living with M.D. in America.
Thank you for taking the time to read this. Any donation helps!
*Any donations over the $10,000.00 amount will be used for his compound drugs, other medications, and travel expenses for drs appts.
God bless!
Shawna (mom) and siblings (Autumn, Brandon, & Ryan)
Devin is unable to enjoy things that we take for granted. His energy level is too low to go places without getting ill. Fainting (syncope), vision loss, and weakness keep him from leaving the house on most days which is also why he can't go to school, travel, hang out with friends, run errands, etc.
Each day Devin takes many different medications, eats hourly to keep up his caloric intake because he does not absorb nutrients, and has learned how to manage each symptom as they come.
As of recently, he is having regular infusions done at Ochsner.
Mitochondrial Disease does not have a cure! There are no two people just alike. I also have Mitochondrial Disease but we have different symptoms. My desire is for us to find out every possible way to help my son so that he can live a normal life! We've exhausted all areas of testing except one....Whole Exome Sequencing. The test is not covered by Devin's medicaid insurance. The test is $10,000 out of pocket and as a single parent, I cannot pay for it. We know that for one person that is a lot but for many people to come together with any donation it is possible. There is only a 25% chance to find the answers we need with this testing...but Devin is worth even a 1% chance!
Please help me find answers for my son. As a family...we are desperate to help him.
Mitochondria exist in every cell except red blood cells, and generate A.T.P.—a form of chemical energy that powers cellular function. At its simplest, mitochondrial disease causes the degeneration of cellular energy production, which can lead to disastrous dysfunction in any of the body’s major systems. According to the U.M.D.F., mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth.
Because we have mitochondria in almost every cell in our bodies, M.D. isn’t a single disease, but a spectrum—an umbrella term for genetic mutations that can manifest across different systems in unpredictable ways. There are over 200 known variations of M.D., and many more that remain unknown. According to U.M.D.F.’s online resource, symptoms range from developmental delays in the brain to vision loss to severe muscle weakness to liver failure. A runner at the bottom of U.M.D.F.’s symptom catalogue reads, “Think mitochondrial disease when three or more organ systems are involved.”
If you haven’t heard of mitochondrial disease, you’re not alone. In the United States, a rare disease is defined as one that affects less than 200,000 people according to the National Institutes of Health. Mitochondrial disease is commonly acknowledged to be one of the most complex and least understood of the rare diseases. U.M.D.F. estimates that each year, 1,000 to 4,000 children in the U.S. are born with M.D. Accounting for the many people who are misdiagnosed or undiagnosed, Yeske estimates that there are about 30,000 people living with M.D. in America.
Thank you for taking the time to read this. Any donation helps!
*Any donations over the $10,000.00 amount will be used for his compound drugs, other medications, and travel expenses for drs appts.
God bless!
Shawna (mom) and siblings (Autumn, Brandon, & Ryan)
Organizer
Shawna Barton
Organizer
Metairie, LA