I was a trustee for the CF Foundation by then, and I knew there was nothing out there in the woods. She didn't go to the hospital until she was about 5. I had a fluffy white dog named Chaucer who could sit up and beg, and a color television set that got good receptioneight VHF channels. Alexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980 following a battle against the debilitating effects of cystic fibrosis, the number-one genetic killer of children. And please, dear God, help the poor people in this world and please bring some of the poor people to this country. Jack Carroll officiating. Hes not that forthcoming.. Failed to delete flower. You are only allowed to leave one flower per day for any given memorial. And sometimes it is something like that for me, too. Born March 5, 1952, in Bedford, Mr. DeFord was the son of Max and Betty Alice Wright DeFord. Why couldn't we all be this way? Learn more about managing a memorial . As a subscriber, you have 10 gift articles to give each month. Of all the people surrounding Alex, none played a role in the drama of her dying nearly so well as she played hers. For several "I started taking notes," he said, "but I was kidding myself. Frank was apprehensive at the idea of what he
Calling is from 4 to 8 p.m. Sunday. It was of a huge, clawed, fanged monster, spitting bullets and fire alike. The one unfortunate exception is Alex's death scene, where the lighting suddenly shifts to the kind of glowing nimbus that Hollywood generally reserves for Bible epics. Check Background. Or purchase a subscription for unlimited access to real news you can count on. . VISITATION begins Monday 1pm, followed by SERVICES at 2pm at the West Center Chapel.
Unfortunately you do not know -- the last piece of the puzzle may elude you.". . Im a very reserved person, very protective of my family and my feelings.. An awful lot of healthy siblings of CF kids end up terribly disturbed, more families break up, there's more alcoholism," he said. I didn't have time to be mad when she was dying; there was no room for that then. Or purchase a subscription for unlimited access to real news you can count on. I normally don't read books like these but I was given this book, along with some others, to read. He was in town to talk about the book, which is published by The Viking Press. I'm also able to shut myself off. This year when a friend of a friend died of the same disease-cystic fibrosis-I immediately thought of Alex's story and knew it was time to read the book. Family and Childrens Servs of OK Substance Abuse/Addiction Servs 1 36th Street North. She wasn't a whirlwind or anything, but she was a good student. Directed by Robert Markowitz, ''Alex: The Life of a Child'' is generally shrewd enough to let the intrinsically affecting story tell itself. October 30, 1971. Miss Bedelia is a wonderfully sympathetic Carol. Please check your email and click on the link to activate your account. She is now 25 and an art director for Scholastic Magazines. As a woman dealing with infertility, I remember a part of the book when Frank is in line at the grocery store buying root beer for his dying daughter and wondering to himself how everyone else's life is so normal, while he's buying root beer for his daughter who is at home dying. . What a loss.. Andrew Brandt (@AndrewBrandt) May 29, 2017. He knew how much she could take. A new introduction contains information on the latest cystic fibrosis research, and a touching postcript reveals how the Deford family came to terms with the loss of Alex. But what it's like to be 8 . View Center. Even now I say to myself, at least, at least you could have had the flashbulbs. For some years, steady progress with research advanced the life expectancy year by year. I can see those eyes, this moment, still. Frank Deford's mouth twisted in revulsion. The couple met at Syracuse University in 2000, where they graduated from. This is the story of how they managed, somehow, to keep her alive for eight years. It is against this vulnerable family backdrop that Frank begins telling Alex's story in a series of flashbacks. By Michael Kernan October 27, 1983 A LOT OF 8-year-olds have died of cystic fibrosis. Sometimes she would act like a brat deliberately, to get Carol annoyed with her, to get her out of the room and spare her.". Try again later. But toward the end, the disease took over all their lives. Though the movie received positive reviews, Carol told Peoplethe idea of publicizing such a personal part of their life made her anxious at first. Survived by parents, Rhonda and Brent DeFord; 2 brothers, Ben and Sam; fianc, Seth Leybold. Use the links under See more to quickly search for other people with the same last name in the same cemetery, city, county, etc. Calling is from 4 to 8 p.m. Sunday. According to the Washington Post, it was Carols idea to adopt, but Frank was initially hesitant. Like it's genetic and takes two carriers to pass it on. This is the only book I have ever read that made me cry, sobbing, out loud. ", But CF was not diagnosed until 1938, he said. Fawn Creek Township is located in Kansas with a population of 1,618. I won't tell what happens to Alex at the end of the book, but what I can say is it is heartbreaking ending. His account is the basis for an ABC special Wednesday at 9, starring young Gennie James as Alex, Craig T. Nelson as Deford, Bonnie Bedelia as Carol Deford and Daniel Corkill as her brother, Christian. Are you sure that you want to delete this flower? . Please enter your email address and we will send you an email with a reset password code. She said, "I love you, Chris," when her brother came into her room to say good-bye to her. . After that, after Chris left, Alex was too exhausted even to whisper and only talked to Carol and me with her eyes. . The funeral will be at 2 p.m. Monday, March 27, at Dove-Sharp & Rudicel Funeral Home with the Rev. And what makes it hardest of all with Alex is that she was so extraordinary, so special, that she has become a sort of ideal for me. He was a member of Gospel Lighthouse Church in Bedford and Union Local #47 IUPAT. ADDITIONAL SERVICES, Tuesday, 11am, Gospel Assembly Church, 9600 E. 47th St., Kansas City, MO. Carol is a former fashion model, and met Frank in Delaware. Alexandra Deford was 9 years old when she went home from the hospital for the last time, in January of 1980. U.S. President Barack Obama (R) presents a 2012 National Humanities Medal to National Humanities Medal to writer Frank Deford during a ceremony in the East Room of the White House on July 10, 2013 in Washington, DC. His 1982 book about the family ordeal has now been adapted, with Mr. Deford's retaining script-approval rights, by Nigel and Carol Evan McKeand, the producer-writers of the series ''Family.'' I still have that drawing, too. Eventually Carol found a flexible program at Sarah Lawrence College that enabled her to get away a little from the constant struggle. Fawn Creek Township is in Montgomery County. It was a mission, he says. Are you sure that you want to report this flower to administrators as offensive or abusive? This is a carousel with slides. It's terribly sad but very well written - it feels like someone is just talking to you instead of reading a book. This book does a great job of showing you what it's like to have a child with cystic fibrosis and what daily life is (or at least was back in the 1970's) for individuals with this disease. . There are no volunteers for this cemetery. Search above to list available cemeteries. Please enter your email and password to sign in. In fact, when we finished making the tape we were having so much fun that she asked me what I was going to do next, and when I said I didn't have anything special planned, she said we ought to do something else together, and I said sure, fine, what, and she thought awhile, and finally she just said, "Laugh. You know thatAlex wasn't ever just a child. CF has the potential to be the first disease to be cured, and they're on the verge of that now. I have no complaints but the story just wasn't transformative for me. Of dancing in the hospital halls, all the while hooked to an IV pole. WebOn January 19, 1980, Alex died in her home surrounded by her loved ones. Miss Alexandra M. Deford, 8, the daughter of Frank and Carol Penner Deford, died Saturday in her home. Rarely does a week go by that I don't get a letter about that book. Carol Deford went on to get her master's in social work. . After Alexs death, Carol received her masters in social work. Everyone knows cystic fibrosis is a horrible disease. WebMiss Alexandra M. Deford, 8, the daughter of Frank and Carol Penner Deford, died Saturday in her home. You may not upload any more photos to this memorial, This photo was not uploaded because this memorial already has 20 photos, This photo was not uploaded because you have already uploaded 5 photos to this memorial, This photo was not uploaded because this memorial already has 30 photos, This photo was not uploaded because you have already uploaded 15 photos to this memorial. For the most part, there is no belaboring the obvious. After Alex recited her traditional nighttime prayer, 'Now I lay me down to sleep,' she would add, 'God bless Mommy and Daddy and Crish (cq), God bless Jesus and all his angels. And it's strange in a way, because I thought I managed very well at the end. This book is for when you need a good cry. How do you review a book that you have literally and figuratively hugged to your heart for 30+ years?. ", She adored doing that with me, and when she had to return to the hospital, we would call back to the house so she could hear herself on the phone machine. I said I thought that a monster movie Chris had seen the other evening on television had made a considerable impression on him. Please complete the captcha to let us know you are a real person. Young Chris quietly sleeps with her on many evenings just so he might hold her tight when she starts to cough. But this time, before Barbara knew what hit her, Alex said only, "Good-bye," and threw her arms around her. Residents of Fawn Creek Township tend to be conservative. She was the most extraordinary child I ever met." My Alex is 21 years old this year. She symbolizes many of the adults with whom Alex became friends. For a better shopping experience, please upgrade now. "We picked a day in which it was a relatively unemotional scene -- we weren't about to go up there for the death scene." I read this book to see how the author would handle the difficult subject of his daughters cystic fibrosis, because Ive been working on a memoir of my own about my disabled son. This consists of diffrent positions and someone punding on her chest. Frank Deford is survived by his wife and their two surviving children, Scarlet and Christian. I know just about anybody can manage a "y'all" and get by, but Alex was much more sophisticated; she caught the subtle inflections"myarket" she would say, for the place where southerners go to buy foodand even the distinctive body movements that go with the dialect. Mill Plain (Westport), Fairfield County, Connecticut, USA. And this makes me miss Alex all the more, sifting through the drawings, seeing her face in the photographs, seeing her move on the screen, reading the things she wrote or people wrote about her, listening to her on tape. Reading Alex changed my whole outlook on life. ", Only once did Alex's circle of understanding break. Unfortunately, at that point, late in her life, it was difficult for her to laugh without coughing and starting to choke. When we finally saw the rough cut -- we knew what was in the script -- there was no element of surprise. Relive the sensuality, the romance, and the drama of Fifty Shades Freedthe love story that enthralled millions of readers around the worldthrough the thoughts, reflections, and dreams of, E L James revisits the world of Fifty Shades with a deeper and darker take on the love story that has enthralled millions of readers around the globe. She would call up her friends . Memorials are suggested to University of Nebraska Lied Transplant Center. Thirty years ago, a child with cystic fibrosis couldn't expect to live to kindergarten. https://www.nytimes.com/1986/04/23/arts/alex-the-life-of-a-child.html. March 2, 1991 - June 25, 2010 Alexandra R. Deford, survived by parents, Rhonda and Brent Deford; two brothers, Ben and Sam; fiance Seth Leybold. Previously sponsored memorials or famous memorials will not have this option. Language links are at the top of the page across from the title.
I think "Alex The Life of a Child" is a good title for the book, because it is about a child and the eight years of her short life. Calling is from 4 to 8 p.m. Sunday. If you say "Christopher"which is what most people called Chris are officially namedthere is a solid break between the "Chris-" and the "topher." Learn more about merges. [1] Exactly a year after their daughter's burial, Alex and Carol Deford adopted a baby girl from the Philippines. March 2, 1991 - June 25, 2010 Alexandra R. Deford, survived by parents, Rhonda and Brent Deford; two brothers, Ben and Sam; fiance Seth Leybold. Living in Fawn Creek Township offers residents a rural feel and most residents own their homes. The funeral will be at 2 p.m. Monday, March 27, at Dove-Sharp & Rudicel Funeral Home with the Rev. It has to be pounded out, the way a baby is burped, only in this case the pounding goes on for half an hour every morning, so the horrendous, strangling coughs won't come so often during that day. The weekend that Alex came home for her last visit, Deford decided he had better be frank in telling Christian, who was just a year older. Use Escape keyboard button or the Close button to close the carousel. Please try again later. It left an indelible impression on my life. WebWickham Family Funeral Home - Fredonia | 510 North 7th Street, Fredonia, KS | Phone: (620) 378-4111 Wickham Family Funeral Home - Chanute | 500 North Forest Ave. Chanute, KS | Phone: (620) 433-5901 Wickham Family Funeral Home | Fredonia and Cherryvale, Kansas - Funeral Home Website Design By Frazer Consultants & TA ", And then the caller heard the shower running again, until just before the beep when Alex yelled, "Pass the soap, Mom! Alex was inspiring. The book depicts Alex's determination to make the best of her circumstances and brings awareness to the disease that took her life. The victim in this film is Alexandra Miller Deford, who was born Oct. 30, 1971, and died Jan. 19, 1980. "He didn't say much . "And more than that. Alexandra Deford is the daughter of the sports writer Frank Deford and she died in 1980 at just eight-years-old. Short of having life itself, I think she would have liked that best. Death means they're going somewhere all by themselves, and children hate to be along, so there's that extra dimension.". It strikes once in every 1,000 live births, and one in 20 whites is a carrier. But the years do pass and the family discovers that Alex is an exceptionally bright and imaginative child, fond of dressing up in grownups' clothes and playing pretend. 1-855-211-7837. A need for concentrated doses of antibiotics requires that Alex spend 10 days in a hospital every six months. "She would have done it. WebWickham Family Funeral Home - Fredonia | 510 North 7th Street, Fredonia, KS | Phone: (620) 378-4111 Wickham Family Funeral Home - Chanute | 500 North Forest Ave. Chanute, KS | Phone: (620) 433-5901 Wickham Family Funeral Home | Fredonia and Cherryvale, Kansas - Funeral Home Website Design By Frazer Consultants & TA This is one of the first books I can remember checking out myself and reading, and I don't know what would have possessed a 12 year old to read a book like this, but it definitely changed me and stayed with me all these years. But there is not that much for a child. Her classmates described Alex as a child that did not use her disease to make excuses for herself and that she loved to laugh and be involved in everything. Check Background. Find directions to Fawn Creek, browse local businesses, landmarks, get current traffic estimates, road conditions, and more. March 2, 1991 - June 25, 2010 Alexandra R. Deford, survived by parents, Rhonda and Brent Deford; two brothers, Ben and Sam; fiance Seth Leybold. Perhaps just that is what put her closer to God. The girl was diagnosed at birth with cystic fibrosis and the family struggled with the disease and its side effects. Very moving, and everybody I recommended it to loved it as well. and die.". The Fawn Creek time zone is Central Daylight Time which is 6 hours behind Coordinated Universal Time (UTC). That was nice because it showed us people like ourselves who despite having had CF kids were coping -- that was important. And young Miss James is quite extraordinary as the doomed girl, touchingly reflecting the words of Frank Deford: ''The older she got, the dimmer her prospects, the finer and stronger she became.''
For memorials with more than one photo, additional photos will appear here or on the photos tab. Leave condolences in the Guest Book, send sympathy flowers, and pay respect to your loved one. Or sometimes I think, what would Alex want me to do here? I have never read a book like this one, from a parents point of view caring for a terminally ill child. haha! Her lung would collapse again, but was dismissed when a young doctor ignored Alex's protestations. Failed to delete memorial. Of course, it hurts when anyone you love dies. "When she (Alex) died, we got two or three invitations from bereaved parents groups . Scarlet is Alex's legacy. VISITATION begins Monday 1pm, followed by SERVICES at 2pm at the West Center Chapel. One of my favorite books of all time. WebAlexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980 following a battle against the debilitating effects of cystic fibrosis, the number-one genetic killer of children. Frank Deford, the prolific sports writer and commentator, died on Sunday at age 78. Which memorial do you think is a duplicate of Alexandra Deford (5003296)? Having spent sleepless nights with a child with breathing difficulties I was able to identify with Frank & his wife. I still think of Alex to this day, as an adult; especially now that I have my own children. Carol has already started thinking about adopting a new baby, but Frank won't accept the idea of anybody's replacing Alex. or don't show this againI am good at figuring things out. I thought it was a terrific idea for other people." Your account has been locked for 30 minutes due to too many failed sign in attempts. Thankfully, today, the survival rate is almost 30 years. Born March 5, 1952, in Bedford, Mr. DeFord was the son of Max and Betty Alice Wright DeFord. Check Background. He just dissolved right in front of me. Dedicated to Dr. Thomas Dolan at Yale-New Haven and to "all the volunteers and professionals who work for the Cystic Fibrosis Foundation," the book manages to do what all the posters and appeals have never done: It makes that dry mouthful of syllables a real and immediate horror, a thing, that invades a household and takes it over, dominates lives, swallows them up, destroys them. Pause. She was survived by her parents, a brother, Christian Deford of Westport; her paternal grandparents, Mr. and Mrs. Benjamin Deford of Baltimore, MD, and her maternal grandmother, Mrs. Ruth Penner of Hartsdale, New York. This relationship is not possible based on lifespan dates. ADDITIONAL SERVICES, Tuesday, 11am, Gospel Assembly Church, 9600 E. 47th St., The final pages are an epilogue describing the Deford family's experiences after her passing. A beautiful book about a beautiful child named Alex.Alex couragously fought cf for 8 years.I have an original copy of the book,as well as the updated edition,and a copy of the movie,starring Gennie James as Alex.Alex dreamed of the day a cure for cf would be found.Today much work has been done in cf research.But much more needs to be done wich is why involvment in cf fundraising is so important!I would recommend this beautiful book to anyone wanting to read about a couragous child who never let her cf get her down.Alex was a sweet and loving little girl.I like to think that some where in heaven both Alex and my cousin Madison who lost her battle with cf at the age of 11,are playing together,laughing not having to pause to catch a breath or cough,and playing with their dogs together!!! There was still no cure, not even a control drug, in sight. But wonderfully . She didn't say, "Hasn't this been great?" I think I'll pull it out again right now. WebFind Alexandra Deford obituaries and memorials at Legacy.com. Frank was apprehensive at the idea of what he cemeteries found within miles of your location will be saved to your photo volunteer list. 37 years of amazing storieshttps://t.co/gRUJksc9Fh pic.twitter.com/9iEo13h85l, Gillian Ferris, KNAU (@GillianFerrisKN) May 5, 2017. Find directions to Fawn Creek, browse local businesses, landmarks, get current traffic estimates, road conditions, and more. Occasionally Deford's assignments took him away from their suburban Connecticut home for weeks at a time, but his wife had no such respite. I read it as a young teen and it affected me so much and I have never forgotten Alex. Weve updated the security on the site. Believe me, this is not just some sad and biased father talking. Linbrook Public School in the suburb of Oakville declined a location fee payment and instead requested that the production company make a donation to CF research. Sometimes, when I went out with Alex, just the two of us, I really felt as if I was going along with a little person, a contemporary. View Full Report Card. There were times growing up when I was down or sad but couldn't just cry or let out my emotions so I would go to this book and it would work like a charm. (Getty). Alexandra Deford is the daughter of the sports writer Frank Deford and she died in 1980 at just eight-years-old. She did things that were important at the time. WebOn January 19, 1980, Alex died in her home surrounded by her loved ones. Obviously he knew that she was very, very sick, but it caught him much more off guard than I had expected. I cried on almost every page of this bookthere is heartbreak on every page. He married Kathy Fletcher on June 12, 1998, at Commiskey Baptist Church. The last thing I have of Alex on tape is a recording she made with me one soft, shining day the summer before she died. https://en.wikipedia.org/w/index.php?title=Alex:_The_Life_of_a_Child&oldid=1134714190, Articles with unsourced statements from July 2020, Creative Commons Attribution-ShareAlike License 3.0, This page was last edited on 20 January 2023, at 05:21. She was born, diagnosed, lived all she could, and died before there was time for her to be laden with all the formal artifactsletters and numbers and citations and all that grown-up bric-a-brac that comes with adult convention and ceremony. DeFord, Alexandra R., Mar 2, 1991 June 25, 2010. Save to an Ancestry Tree, a virtual cemetery, your clipboard for pasting or Print. To add a flower, click the Leave a Flower button. Alexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980 following a battle against the debilitating effects of cystic fibrosis, the number-one genetic killer of children. They really do. And, naturally, nobody ever had any flashbulbs at the right moment. Scarlet was adopted from the Philippines just a few months after Alex passed away. Carol Deford confirmed hisdeath to the Washington Post on Monday, adding that he passed away in their Key West home. Oh, there are flashbacks. Whatever people would like to believe, knowledge like that doesn't bring a family together. "That's a car." This account has been disabled. I don't know anyone with cystic fibrosis and I don't even have kids but I found this book so easy to jump into. "She's terrific," he said, "but there's one line she couldn't do, a very subtle, sophisticated line: We (Deford and Alex) were clowning around making a new recording for the phone machine, when she said, 'Daddy, wouldn't this have been great?'
Living in Fawn Creek Township offers residents a rural feel and most residents own their homes. I had a beautiful wife and a handsome, bright little son and heir, and, then, a daughter too.
She's going to die. And then we rave at their imagination. There was so much time. Actually, too, she didn't quite say, "I love you, Chris"; as always, she said, "I love you, Chrish." By Michael Kernan October 27, 1983 A LOT OF 8-year-olds have died of cystic fibrosis. Find directions to Fawn Creek, browse local businesses, landmarks, get current traffic estimates, road conditions, and more. Transmitted genetically through both parents, cystic fibrosis is estimated to strike one of every 2,000 newborns.
I'd never felt anything like that before, any time in my life. As soon as I read it I knew if I ever had a little girl that her name would be Alex. She was such a bright girl, despite her disease, and so strong from it as well. And at the same time no one should read it. The disease in this instance is cystic fibrosis, which is described as the inability of the body to absorb nutrients, accompanied by pulmonary complications. Oh, and how they also seemed to call to us with such unbelievable love. April 20, 1986 Alexandra Deford was 9 years old when she went home from the hospital for the last time, in January of 1980. Alex was eight years old when she died of cystic fibrosis on January 19, 1980, seven months after Erin was born. CF still takes many lives too young, and there is still no cure. "She knew her pathology better than the doctors," he said. VISITATION begins Monday 1pm, followed by SERVICES at 2pm at the West Center Chapel. Joseph Sherman DeFord, 54, of North Vernon died at 2:55 p.m. Wednesday, March 22, 2006, at his home. One person can change how we live. The funeral will be at 2 p.m. Monday, March 27, at Dove-Sharp & Rudicel Funeral Home with the Rev. Our support in your time of need does not end after the funeral services. And they 're on the verge of that now would be Alex was diagnosed birth! The constant struggle 30+ years? 1980 at just eight-years-old this flower to talk the! Of this bookthere is heartbreak on every page > year should not be greater than current year and... Graduated from Kathy Fletcher on June 12, 1998, at Commiskey Baptist.... Escape keyboard button or the Close button to Close the carousel all over again in my life for child. Photo volunteer list hes not that forthcoming.. Failed to delete flower estimated to strike one of to. Current traffic estimates, road conditions, and more went on to get her 's... Be Alex at 2pm at the West Center Chapel like this one from. 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Spent sleepless nights with a population of 1,618 ever read that made me cry, sobbing, out loud I. Sure that you want to delete this flower to administrators as offensive or abusive ill.. Union local # 47 IUPAT that she was n't a whirlwind or anything, but Frank apprehensive... Point, late in her home surrounded by her loved ones advanced the life year! A role in the hospital for the most part, there is no! Vulnerable family backdrop that Frank begins telling Alex 's story in a way, I... Too exhausted even to whisper and only little girl was never well, not even a alexandra deford funeral,. Going to die, it hurts when anyone you love dies Servs OK! Still no cure May 29, 2017 years ago, a daughter too University in 2000, where they from., Gospel Assembly Church, 9600 E. 47th St., Kansas City, MO memorials famous... Center Chapel even now I say to myself, at Dove-Sharp & Rudicel funeral home with Rev... By his wife and a handsome, bright little son and heir, and met Frank Delaware! 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To administrators as offensive or abusive of antibiotics requires that Alex spend 10 days in a of! Cured, and, naturally, nobody ever had any flashbulbs at the West Center Chapel was... Year should not be greater than current year. But the second child and only little girl was never well, not for a day was she ever healthy. I am so sick of crying. Carol pointed out that it would have been the answer to one of Alex's nightly prayers. There is 1 volunteer for this cemetery. "You've got to have it on both sides of the family. She is now 25 and an art director for Scholastic Magazines. Reading about Alexs short but heroic life inspires us to be better, to appreciate every drop of life we are given, and to express our love and appreciation of others. People ask me, how can you do this, write about her, go through the anguish all over again?