Real stories from patients with rare disease diagnoses.
Doose Syndrome
In 2010, Deavin Arnold-Hadley and Chris Hadley welcomed an adorable son, Mason, into the world. Despite experiencing normal milestones early in his life, things began to take a drastic turn in 2012. After countless visits to the hospital and her relentless pursuit to obtain a second opinion and diagnosis, Mason was diagnosed with Doose Syndrome. Doose Syndrome is an extremely rare form of epilepsy. During this time, Deavin’s eyes were opened to the variations in treatment options for children with Doose Syndrome. The treatment options presented seemed to have negative effects on her son. Deavin knew that she needed to take a different route for her son’s well-being. At this point, Deavin made a life-changing decision to introduce her son to the medical ketogenic diet. She can truly say that she saw immediate results for Mason!
The Hadley family lives in Fishers, Indiana where they continue their journey with the ketogenic diet and homeschool. The journey to get to a place of wellness for Mason did not come without a price. There were many sleepless nights filled with anxiety, but they knew that they had to push through. Their faith and unconditional love for Mason gives them the strength they need. Deavin also found that being able to serve as a source of support and encouragement for others has brought her great joy and peace. The Hadley family has seen the power of faith and community when living through a difficult and life-altering experience. They truly believe in the importance of advocacy and empowerment.
Lennox-Gastaut Syndrome
Our son had his first seizure on the third day of online school. We knew that this school year was going to be different due to COVID-19, but this totally caught us off guard. He saw several health care professionals that thought it probably would be his only seizure. Unfortunately, they were wrong. Since then, we’ve been on an endless roller coaster ride of doctor’s appointments, tests, and medications. Our son was officially diagnosed with Lennox-Gastaut Syndrome in the Fall of 2020. Since then, we have taken steps to make our home safer for him. In addition, we are working with our school system to ensure that the right accommodations are in place for his education. In spite of all the seizures, our son continues to be a loveable, happy, and resilient little boy!
My brief bio as a public health practitioner:
My career as a public health professional has definitely been helpful while navigating on this journey. Our son also has autism and I’ve used my training to teach faith-based communities about how to be more accommodating for those with autism and their families. Now that we also have the LGS diagnosis, I plan to continue using my training to educate others about this rare disease and advocate for my son and others like him.
HM
My name is Julie Thornton-Brison and I am a proud citizen of the Cherokee Nation of Oklahoma. I am a South Eastern Woodlands artist with a main focus in both traditional Pre- and Post-Contact textiles and weaving. I have continued mentorship under several Cherokee National Treasurers, as well as other accomplished artists in textiles, baskets, weaving, and beadwork. I represented the Cherokee Nation as Junior Miss Cherokee, 2012-2013, Miss Cherokee, 2013-2014, Miss Oklahoma Indian Summer, 2015-2016, as well as multiple terms on the Cherokee Nation Tribal Youth Council. I was also a member of the award-winning Cherokee National Youth Choir, served as the Youth Advocate Awardee for the Seventh Generation Conference in 2016 and awarded the “Cherokee Nation Phoenix’s 7 Feathers Award for Culture in 2020. Over the last 11 years I have won numerous awards at venues across the United States, the presence of Cherokee culture is found in all of my work. I am a full time textiles artist, and reside in Checotah, OK, I.T.
I have a rare neurological disease called HM that affects my eyesight, mobility, and memory. This disease causes me to become paralyzed on the right side of my body as well as have other “stroke” like symptoms. Other complications/comorbidities have included seizures, brain damage, loss of hearing/sight, and chronic pain. As a result, I left my desk job as a paralegal and pursued my dream as a full-time artist, which has always been the main goal. This is also my way to constructively deal with the medical issues I endure daily. I strongly believe Traditional Medicine in the arts attributes to my positive attitude and outlook on life.
IgA Nephropathy
Greetings, my name is Gerilyn Antonio. I am The Charcoal Streaked Division of the Red Running Into the Water Clan, born for Two Who came to the Water Clan. My paternal grandfather’s clan is the Salt People clan and my maternal grandfather’s clan is The Red Bottom People clan. I am a proud Diné, Navajo woman. I am 24 years old and currently residing in Farmington, New Mexico with my fiancé, son, and two dogs, Gigi and Kai. At the end of 2020, I became a first-time mother. I have a newborn baby boy. I am currently in graduate school at New Mexico State University studying a Master of Public Health. My program concentration is Health Education and Promotion. Additionally, I am interning with a non-profit organization, New Mexico Alliance of Health Councils. My current intern work is centered around COVID-19 recovery planning among New Mexican communities.
I come from a family of 2 brothers, 2 sisters, mother, and father. I have two nephews who I greatly adore. I lost my biological father in 2009. My biological father’s family has a history of kidney disease. My family is very involved and supportive with my educational and life endeavors. At the age of 15, I was diagnosed with a rare disease known as IgA Nephropathy. It is a kidney disease that affects filtration of waste and removing fluid in the blood. It occurs when immunoglobulin A builds up in the kidneys. As a result of the buildup, the kidneys begin to leak protein and blood into the urine. This disease has no cure. Treatment with medication and diet are encouraged to slow down the progression of the disease. The damage to kidneys can lead to end-stage kidney disease. Although I couldn’t have prevented my kidney disease from occurring, my goal is to apply my health education platform and personal experience to influence prevention of illnesses and diseases among my Navajo community. I want to live a purpose driven life and I realized that a career in public health is a way to truly live my life dedicated to the care of others.
In 2010, Deavin Arnold-Hadley and Chris Hadley welcomed an adorable son, Mason, into the world. Despite experiencing normal milestones early in his life, things began to take a drastic turn in 2012. After countless visits to the hospital and her relentless pursuit to obtain a second opinion and diagnosis, Mason was diagnosed with Doose Syndrome. Doose Syndrome is an extremely rare form of epilepsy. During this time, Deavin’s eyes were opened to the variations in treatment options for children with Doose Syndrome. The treatment options presented seemed to have negative effects on her son. Deavin knew that she needed to take a different route for her son’s well-being. At this point, Deavin made a life-changing decision to introduce her son to the medical ketogenic diet. She can truly say that she saw immediate results for Mason!
The Hadley family lives in Fishers, Indiana where they continue their journey with the ketogenic diet and homeschool. The journey to get to a place of wellness for Mason did not come without a price. There were many sleepless nights filled with anxiety, but they knew that they had to push through. Their faith and unconditional love for Mason gives them the strength they need. Deavin also found that being able to serve as a source of support and encouragement for others has brought her great joy and peace. The Hadley family has seen the power of faith and community when living through a difficult and life-altering experience. They truly believe in the importance of advocacy and empowerment.
Our son had his first seizure on the third day of online school. We knew that this school year was going to be different due to COVID-19, but this totally caught us off guard. He saw several health care professionals that thought it probably would be his only seizure. Unfortunately, they were wrong. Since then, we’ve been on an endless roller coaster ride of doctor’s appointments, tests, and medications. Our son was officially diagnosed with Lennox-Gastaut Syndrome in the Fall of 2020. Since then, we have taken steps to make our home safer for him. In addition, we are working with our school system to ensure that the right accommodations are in place for his education. In spite of all the seizures, our son continues to be a loveable, happy, and resilient little boy!
My brief bio as a public health practitioner:
My career as a public health professional has definitely been helpful while navigating on this journey. Our son also has autism and I’ve used my training to teach faith-based communities about how to be more accommodating for those with autism and their families. Now that we also have the LGS diagnosis, I plan to continue using my training to educate others about this rare disease and advocate for my son and others like him.
My name is Julie Thornton-Brison and I am a proud citizen of the Cherokee Nation of Oklahoma. I am a South Eastern Woodlands artist with a main focus in both traditional Pre- and Post-Contact textiles and weaving. I have continued mentorship under several Cherokee National Treasurers, as well as other accomplished artists in textiles, baskets, weaving, and beadwork. I represented the Cherokee Nation as Junior Miss Cherokee, 2012-2013, Miss Cherokee, 2013-2014, Miss Oklahoma Indian Summer, 2015-2016, as well as multiple terms on the Cherokee Nation Tribal Youth Council. I was also a member of the award-winning Cherokee National Youth Choir, served as the Youth Advocate Awardee for the Seventh Generation Conference in 2016 and awarded the “Cherokee Nation Phoenix’s 7 Feathers Award for Culture in 2020. Over the last 11 years I have won numerous awards at venues across the United States, the presence of Cherokee culture is found in all of my work. I am a full time textiles artist, and reside in Checotah, OK, I.T.
I have a rare neurological disease called HM that affects my eyesight, mobility, and memory. This disease causes me to become paralyzed on the right side of my body as well as have other “stroke” like symptoms. Other complications/comorbidities have included seizures, brain damage, loss of hearing/sight, and chronic pain. As a result, I left my desk job as a paralegal and pursued my dream as a full-time artist, which has always been the main goal. This is also my way to constructively deal with the medical issues I endure daily. I strongly believe Traditional Medicine in the arts attributes to my positive attitude and outlook on life.
Greetings, my name is Gerilyn Antonio. I am The Charcoal Streaked Division of the Red Running Into the Water Clan, born for Two Who came to the Water Clan. My paternal grandfather’s clan is the Salt People clan and my maternal grandfather’s clan is The Red Bottom People clan. I am a proud Diné, Navajo woman. I am 24 years old and currently residing in Farmington, New Mexico with my fiancé, son, and two dogs, Gigi and Kai. At the end of 2020, I became a first-time mother. I have a newborn baby boy. I am currently in graduate school at New Mexico State University studying a Master of Public Health. My program concentration is Health Education and Promotion. Additionally, I am interning with a non-profit organization, New Mexico Alliance of Health Councils. My current intern work is centered around COVID-19 recovery planning among New Mexican communities.
I come from a family of 2 brothers, 2 sisters, mother, and father. I have two nephews who I greatly adore. I lost my biological father in 2009. My biological father’s family has a history of kidney disease. My family is very involved and supportive with my educational and life endeavors. At the age of 15, I was diagnosed with a rare disease known as IgA Nephropathy. It is a kidney disease that affects filtration of waste and removing fluid in the blood. It occurs when immunoglobulin A builds up in the kidneys. As a result of the buildup, the kidneys begin to leak protein and blood into the urine. This disease has no cure. Treatment with medication and diet are encouraged to slow down the progression of the disease. The damage to kidneys can lead to end-stage kidney disease. Although I couldn’t have prevented my kidney disease from occurring, my goal is to apply my health education platform and personal experience to influence prevention of illnesses and diseases among my Navajo community. I want to live a purpose driven life and I realized that a career in public health is a way to truly live my life dedicated to the care of others.
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