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Brittany Cilley, native of Northfield NH, is facing medical challenges and looking to be part of a drug trial process to find a halt in progression for Wolfram’s Syndrome. Wolfram’s Syndrome is an extremely rare neurological disorder which affects 1 in 500,000 patients worldwide. The personal expense to Brittany’s family for her to volunteer to be part of the drug trial is about $30,000.00. This will be needed for travel and housing a minimum of 10 times over an 8-month trial process in St. Louis, MO. For more information on the trials, please visit the following website:
https://source.wustl.edu/2016/11/researchers-launch-first-clinical-trial-wolfram-syndrome/
Brittany is an inspirational, intelligent, charming, easygoing 18-year-old young lady. She lives with her mom, dad, sister Laura and two dogs in Northfield, NH. She is a senior at Winnisquam Regional High School, where she is an active member of the National Honor Society, and she is a communicant of St Joseph Parish in Belmont. She loves horseback riding, playing many different card games, cooking, and anything Disney-related.
In 2005, at the age of 6, Brittany was diagnosed with Type I diabetes. This was the first symptom of a change in health in a perfectly healthy child. This became a challenging additional stressor for her family while her father was deployed on one of many military assignments. Through the efforts of doctors at Dartmouth Hitchcock Medical Center, she learned how to control her diabetes, and she taught us that diabetes was not going to stop her.
Brittany’s medical challenges continued at the age of 7 when she was diagnosed with optic atrophy. After significant testing at Dartmouth, the specialists were stumped as to what was happening to her. She was referred to Cleveland Clinic in Cleveland, OH for further testing, as Dartmouth’s doctors knew the issue was in her DNA and could not determine what it was. One year later Brittany was diagnosed with Wolframs’ Syndrome. We were also told her life expectancy was about 30 years.
As time progressed, other medical issues began to develop. Her vision deteriorated to the point that she is now totally blind. She also began to lose her hearing and was diagnosed with diabetes insipidus. She was and continues to be the only known patient in New Hampshire with Wolfram Syndrome. Throughout all of this, Brittany has never lost her positive attitude and has never given up.
Brittany has been attending a medical clinic every summer for the past 5 years in St. Louis, MO to help in finding a cure for Wolfram Syndrome. In October, 2016, the clinic advised us that they have enough information and approval to begin a drug trial that would stop the progression of the disease. We have to ensure that Brittany has every opportunity in the world, and we accepted the offer to join in the clinical trials.
Any funds raised above what the family needs will be donated to the Snow Foundation, the leading foundation in helping to find a cure for Wolfram Syndrome. For more information on the Snow Foundation, please click the link below:
http://thesnowfoundation.org/
Your donation will be greatly appreciated!
https://source.wustl.edu/2016/11/researchers-launch-first-clinical-trial-wolfram-syndrome/
Brittany is an inspirational, intelligent, charming, easygoing 18-year-old young lady. She lives with her mom, dad, sister Laura and two dogs in Northfield, NH. She is a senior at Winnisquam Regional High School, where she is an active member of the National Honor Society, and she is a communicant of St Joseph Parish in Belmont. She loves horseback riding, playing many different card games, cooking, and anything Disney-related.
In 2005, at the age of 6, Brittany was diagnosed with Type I diabetes. This was the first symptom of a change in health in a perfectly healthy child. This became a challenging additional stressor for her family while her father was deployed on one of many military assignments. Through the efforts of doctors at Dartmouth Hitchcock Medical Center, she learned how to control her diabetes, and she taught us that diabetes was not going to stop her.
Brittany’s medical challenges continued at the age of 7 when she was diagnosed with optic atrophy. After significant testing at Dartmouth, the specialists were stumped as to what was happening to her. She was referred to Cleveland Clinic in Cleveland, OH for further testing, as Dartmouth’s doctors knew the issue was in her DNA and could not determine what it was. One year later Brittany was diagnosed with Wolframs’ Syndrome. We were also told her life expectancy was about 30 years.
As time progressed, other medical issues began to develop. Her vision deteriorated to the point that she is now totally blind. She also began to lose her hearing and was diagnosed with diabetes insipidus. She was and continues to be the only known patient in New Hampshire with Wolfram Syndrome. Throughout all of this, Brittany has never lost her positive attitude and has never given up.
Brittany has been attending a medical clinic every summer for the past 5 years in St. Louis, MO to help in finding a cure for Wolfram Syndrome. In October, 2016, the clinic advised us that they have enough information and approval to begin a drug trial that would stop the progression of the disease. We have to ensure that Brittany has every opportunity in the world, and we accepted the offer to join in the clinical trials.
Any funds raised above what the family needs will be donated to the Snow Foundation, the leading foundation in helping to find a cure for Wolfram Syndrome. For more information on the Snow Foundation, please click the link below:
http://thesnowfoundation.org/
Your donation will be greatly appreciated!