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 D

  (photo from last year, in anticipation of changing that number this evening from 41 to 42) November 13 today is CB Leaver's birthday. CB is the MSI Press author of the popular Mommy Poisoned Our House Guest and one of the oldest CHARGE Syndrome adults in the world. He knows only three others world-wide (Ohio, Massachusetts, and Netherlands) who have reached his age of 42 years (one is actually 45, the others are 42, as well) but thinks there may be another one or two somewhere. It is no mere feat, then, that he has survived, and robustly so, after a very tenuous start in life in which he as given 0% chance of survival by well respected doctors at Children's Hospital of Pittsburgh and rescued by doctors at Children's Hospital in Boston, Cincinnati Children's Hospital, Children's National Medical Center, Georgetown University Hospital, and Stanford Children's Medical Center -- it took a countrywide network to turn that 0% into 100%) and no mere feat also that

  Today would have been the 54th anniversary for Carl  and me. Last year, I spent it in the cemetery with Carl, as I did the year before. This year I cannot because I am in Bandung, Indonesia, but perhaps that is just as well.  On our 51st, he was alive, but not well. Three weeks earlier, he had fallen, been xrayed, and found to be in the advanced stage of cancer of unknown primary , with liver, lungs, bones, and stomach completely riddled with cancer cells, blood clots in his lungs, and his bones throwing off cells to create hypercalcemia, the reason he had fallen. It was a difficult time. We were just coming out of the covid months. We brought our CHARGE Syndrome son CB who had been living in group homes for 20 years home when they were not careful with protection from covid. At the same time, our spina bifida daughter, who lives about 30 miles to the south of us, independently, with a county-provided part-time aide lost her caregiver to surgery and no one wanted to take over, given

  Shenan (CB) Leaver, author of Mommy Poisoned Our House Guest , was recently interviewed by the Mission Village Voice , where his book is being serialized. From the MVV introduction to the column: "Mommy Poisoned Our House Guest is collection of anecdotes about a 'detail-oblivious' homemaker and traveler, told from the point of view of CB, her mentally challenged son. The simplicity of language has made this book a favorite with ESL students, and the humorous 'conclusion' about life from a child's point of view endears it to anyone with a sense of humor. The reason CB's mother worked with him to write the book was to teach him the impact of literacy -- why people write and why people read. Even though it has been impossible for him to learn to read and write very much, through the joint preparation of the book he did learn a lot about literacy. CB is a 42-year-old CHARGE Syndrome, on of about 4-5 worldwide his age. He was given 0% chance of living, dispro

  Cancer Diary, begun after the death of Carl Leaver from a so-far-inexplicable and very aggressive cancer, Cancer of Unknown Primary , takes the day off on March 20 to mark his second marriage anniversary in Heaven. Carl was married March 20, 1970 and died August 16, 2021, five months after being diagnosed with CUP. Carl's wife marked this special day with lunch at Carl's favorite restaurant, Pizza Factory, with his lookalike son, who has CHARGE Syndrome , and the son's caregiver and her family. Carl's Cancer Compendium, founded to help families who suddenly find themselves faced with a diagnosis of cancer with little places to turn except lots of time lost to Internet research, updates the site weekly. This week a major reorganization was begun to make the site easier to read and a place where information can be found more quickly. Check it out! (It is quite fitting that today is also Nowruz , a new year and time of new beginnings.) For other Cancer Diary posts, clic

  Peek into the future! Wait just a bit. Coming up some time this year is the publication of Cold Heat and Crazy Doctor, a new book by Betty Lou Leaver, highlighting the hilarious language usage of a CHARGE Syndrome child/adult with disinhibition and providing scientific explanations for the lexical choices.  Watch for upcoming excerpts. For more posts about Betty Lou Leaver and her books, click HERE . Sign up for the MSI Press LLC newsletter Follow  MSI Press  on  Twitter ,  Face Book , and  Instagram .   Interested in publishing with  MSI Press LLC ? Check out information on  how to submit a proposal . Planning on self-publishing and don't know where to start? Our  author au pair  services will mentor you through the process. Interested in receiving a free copy of this or any MSI Press LLC book  in exchange for  reviewing  a current or forthcoming MSI Press LLC book? Contact editor@msipress.com. Want an  author-signed copy  of this book? Purchase the book at 25% discount (use cou

  Times were tense. I was caregiving for my husband, dying from cancer and on chemotherapy that required multiple trips a week to a distant hospital, my spina bifida daughter in a city a half-hour away who had lost her caregiver during the days of covid, and a CHARGE Syndrome adult son living at home -- and trying to run a business at the same time. The son tried to help out as best he could with his own care, but he did not always have the skills to do so. To wit, the scene above that ensued when he tried to help out by making his own breakfast -- one that at least brought a moment of levity into a too-tense life. Speaking from personal experience, the spouse (in this case wife, but it really does not much which spouse is pressed into the role) who ends up as the caregiver for a cancer patient is in a no-win situation, emotionally and physically. The role of spouse is to support the spouse and to navigate through life together, IMHO. That complicates the matter of caregiving. The two

  Today's back story is about the book, Mommy Poisoned Our House Guest  by Shenan (CB) Leaver with Betty Lou Leaver. From the co-author: CB Leaver , the author, is a mentally challenged CHARGE Syndrome adult who never learned to read or write. His mother, Betty Lou Leaver, a highly published author, who wanted her son to understand the purpose of the written word: sharing thoughts and/or information with others. It took a full year of working together to put CB's remembered stories on paper, to check that they had been accurately transcribed. CB learned a lot about the written word both in the process of writing and in getting feedback from pre-publication readers of the manuscript. CB subsequently did a book signing at the Los Angeles Book Fair. He had a great time learning about reader reactions to his book. He was also adept at using his people skills and humor to draw readers to his booth.  Book available at 25% discount with code FF25 at msipress.com/shop. Read excerpts a

    Peek into the future! Wait just a bit. Coming up some time this year is the publication of Cold Heat and Crazy Doctor, a new book by Betty Lou Leaver, highlighting the hilarious language usage of a CHARGE Syndrome child/adult with disinhibition and providing scientific explanations for the lexical choices.  Watch for upcoming excerpts. For more posts about Betty Lou Leaver and her books, click  HERE . Sign up for the MSI Press LLC newsletter Follow  MSI Press  on  Twitter ,  Face Book , and  Instagram .   Interested in publishing with  MSI Press LLC ? Check out information on  how to submit a proposal . Planning on self-publishing and don't know where to start? Our  author au pair  services will mentor you through the process. Interested in receiving a free copy of this or any MSI Press LLC book  in exchange for  reviewing  a current or forthcoming MSI Press LLC book? Contact editor@msipress.com. Want an  author-signed copy  of this book? Purchase the book at 25% discount (use