Help Brylee fight Mito Disease!
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Help Brylee fight mitochondrial disease!
My niece, Brylee Hudson was born on May 31, 2016 weighing 8lbs and 8oz at 19” long. Shortly after birth, Brylee stopped breathing and was rushed to NICU. Her oxygen saturation was low, her platelet count and blood sugars were very low, and she would not eat. She was given oxygen and a feeding tube. About a week after admission to NICU, Brylee was taken off oxygen. Her platelets increased and her blood sugar stabilized. She still wouldn’t eat. The doctors explained that the ventricles in her brain were enlarged, her kidneys did not develop correctly, and she had a heart murmur. Testing began. All tests came back negative, leaving doctors confused. On July 3, 2016, Brylee was sent home from the hospital for the first time. She was eating better and had gained a couple of ounces. There was hope.
On July 7, 2016 Brylee was rushed back to the hospital with labored breathing and strange movements. Her oxygen levels were low. She was sent to St. Louis Children’s Hospital where the neurologist quickly identified that Brylee was having seizures and needed to be admitted to PICU for immediate treatment where she was given anti-seizure medication. Tests began on baby Brylee: spinal taps, labs, IVs, oxygen and feeding tubes all over again. Blood was drawn from every accessible vein in her body, including her forehead. None of the tests explained why she was having seizures, but they learned that her lactic acid levels were dangerously high, although she was not showing any symptoms. After two days of anti-seizure medication and a slightly lower lactic acid level (still high, but not dangerously), Brylee was transferred to neurology for further observation.
The next week, we had questions, but no answers. More tests were done. Finally, the neurologist consulted with genetics and informed the family that it appeared Brylee suffered from mitochondrial disease, although we did not know which type. Since mitochondria performs numerous functions in the human body, doctors were unsure how it would manifest itself. We would not have any more answers for six weeks.
What is mitochondrial disease? Mitochondria create over 90% of the energy that is used to perform bodily functions that keep us alive. When the mitochondria malfunction, mitochondrial disease develop. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. The prognosis is unpredictable as it varies from person to person. Some people live a normal life and are minimally affected; others can be severely compromised with the disease. Treatment for mitochondrial disease include medication and recommendations. Medication only treats the symptoms. Recommendations include the use of vitamin therapy, conserving energy, avoiding exposure to illness, and eating healthy.
So, while we waited for the specific type of mitochondrial disease Brylee has, she was put on a “mitochondrial cocktail” of vitamins in an attempt to help her with functionality and development. We later learned that Brylee’s mitochondrial disease is unknown, meaning that there’s not a lot of research on the mutations found in her blood.
Amid the magnitude of follow up appointments and tests, Brylee is also legally blind. There is hope that her vision can be surgically corrected in the future.
Today, at age one, Brylee is 14 pounds, 7 ½ ounces and is 25” long. Over the past year, this disease has affected Brylee's growth, muscle coordination, muscle weakness, gastrointestinal system, vision, and she has seizures (is on medication). This disease has hindered her ability to eat and reach important milestones. She has not rolled over, she does not speak or crawl, she cannot hold her head up, does not have strong muscle coordination, and still drinks from a bottle. She is followed by St. Francis’ Pediatric Clinic, cardiology, urology, neurology, genetics, and her regular pediatrician. She is being seen by speech and occupational therapists to help offset some of these hurdles.
Brylee’s need for medical care is relentless. The costs of medical care, surgeries, traveling, hotels, medications, etc., have hurt the family financially and there is no end in sight. Please donate to help Brylee's family pay for the treatment she needs, and to travel to the best doctors. This is an urgent need. Any amount helps.
We pray that doctors identify the type of mitochondrial disease affecting Brylee so that we can take the best course of action. We pray that her suffering can stop so that she may live a happy life with her parents and big sister (and aunt!).
Thank you, and God Bless.
My niece, Brylee Hudson was born on May 31, 2016 weighing 8lbs and 8oz at 19” long. Shortly after birth, Brylee stopped breathing and was rushed to NICU. Her oxygen saturation was low, her platelet count and blood sugars were very low, and she would not eat. She was given oxygen and a feeding tube. About a week after admission to NICU, Brylee was taken off oxygen. Her platelets increased and her blood sugar stabilized. She still wouldn’t eat. The doctors explained that the ventricles in her brain were enlarged, her kidneys did not develop correctly, and she had a heart murmur. Testing began. All tests came back negative, leaving doctors confused. On July 3, 2016, Brylee was sent home from the hospital for the first time. She was eating better and had gained a couple of ounces. There was hope.
On July 7, 2016 Brylee was rushed back to the hospital with labored breathing and strange movements. Her oxygen levels were low. She was sent to St. Louis Children’s Hospital where the neurologist quickly identified that Brylee was having seizures and needed to be admitted to PICU for immediate treatment where she was given anti-seizure medication. Tests began on baby Brylee: spinal taps, labs, IVs, oxygen and feeding tubes all over again. Blood was drawn from every accessible vein in her body, including her forehead. None of the tests explained why she was having seizures, but they learned that her lactic acid levels were dangerously high, although she was not showing any symptoms. After two days of anti-seizure medication and a slightly lower lactic acid level (still high, but not dangerously), Brylee was transferred to neurology for further observation.
The next week, we had questions, but no answers. More tests were done. Finally, the neurologist consulted with genetics and informed the family that it appeared Brylee suffered from mitochondrial disease, although we did not know which type. Since mitochondria performs numerous functions in the human body, doctors were unsure how it would manifest itself. We would not have any more answers for six weeks.
What is mitochondrial disease? Mitochondria create over 90% of the energy that is used to perform bodily functions that keep us alive. When the mitochondria malfunction, mitochondrial disease develop. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure. The prognosis is unpredictable as it varies from person to person. Some people live a normal life and are minimally affected; others can be severely compromised with the disease. Treatment for mitochondrial disease include medication and recommendations. Medication only treats the symptoms. Recommendations include the use of vitamin therapy, conserving energy, avoiding exposure to illness, and eating healthy.
So, while we waited for the specific type of mitochondrial disease Brylee has, she was put on a “mitochondrial cocktail” of vitamins in an attempt to help her with functionality and development. We later learned that Brylee’s mitochondrial disease is unknown, meaning that there’s not a lot of research on the mutations found in her blood.
Amid the magnitude of follow up appointments and tests, Brylee is also legally blind. There is hope that her vision can be surgically corrected in the future.
Today, at age one, Brylee is 14 pounds, 7 ½ ounces and is 25” long. Over the past year, this disease has affected Brylee's growth, muscle coordination, muscle weakness, gastrointestinal system, vision, and she has seizures (is on medication). This disease has hindered her ability to eat and reach important milestones. She has not rolled over, she does not speak or crawl, she cannot hold her head up, does not have strong muscle coordination, and still drinks from a bottle. She is followed by St. Francis’ Pediatric Clinic, cardiology, urology, neurology, genetics, and her regular pediatrician. She is being seen by speech and occupational therapists to help offset some of these hurdles.
Brylee’s need for medical care is relentless. The costs of medical care, surgeries, traveling, hotels, medications, etc., have hurt the family financially and there is no end in sight. Please donate to help Brylee's family pay for the treatment she needs, and to travel to the best doctors. This is an urgent need. Any amount helps.
We pray that doctors identify the type of mitochondrial disease affecting Brylee so that we can take the best course of action. We pray that her suffering can stop so that she may live a happy life with her parents and big sister (and aunt!).
Thank you, and God Bless.
Organizer and beneficiary
Michelle Hudson Seelbinder
Organizer
Savannah, GA
Amanda Hudson
Beneficiary
