MSI Press Blog

  Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare disease. Rare Disease Day is meaningful for MSI Press since one of its authors, Shenan (CB) Leaver suffers from CHARGE Syndrome. CHARGE is so rare that he is one of only a handful of survivors in his age group worldwide -- he has personally found four besides himself! CHARGE Syndrome is a disorder that affects many areas of the body. CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), growth retardation, genital abnormalities, and ear abnormalities. The pattern of malformations varies among individuals with this disorder, and the multiple health problems can be life-threatening in infancy. When CB was born 42 years ago, CHARGE was not even known! Now, 70% of children born with CHARGE make it to age

  Peek into the future...and wait just a bit. Coming up some time this year is the publication of Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doah

  Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doa

  Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doa

  Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doa

    Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole D

  Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doa

Peek into the future...and wait just a bit. Coming up some time this year is the publication of  Stealing Doah , a new book by Elizabeth Mahlou.  The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doah

  Carl Leaver , to whom Cancer Diary and the CCC are dedicated, has a lookalike son. Their interests and behaviors are essentially the same. Carl's son CB has his same build -- except that he is a foot shorter, part of the CHARGE Syndome with which he was born. Carl died of Cancer of Unknown Primary; however, his oncologist believed (gut instinct plus experience) that it started in the colon. Carl could have had regular colonoscopies, but he foolishly chose not to because he was super-healthy. (The only time he was sick enough to vomit was one day when he was 21.) Unfortunately, he died super-healthy. Never vomited again, ever. Never felt sick until cancer wore out his energy and his muscles and then his thinking capacity. So, lesson learned? CB gets regular colonoscopies? His siblings do, and his brother has had some polyps removed. CB, however, cannot. As his gastroenterologist says, as a result of CHARGE Syndrome, CB has a 35% chance of dying from any procedure that requires int