alexandra deford funeral
Reviewing her work, I can see that Alex did begin to develop some specialties in the art line as she got older: houses (always with smoke curling out of chimneys), bunny rabbits and dogs (you could tell them apart because bunny rabbits were the ones in spring), flowers and trees, both more resembling lollipops, and rainbows. DeFord, Alexandra R., Mar 2, 1991 June 25, 2010. Pass the soap, Mom! There were wonderful moments for the whole family: brief trips, Broadway shows, the excitement for Alex of being the Connecticut poster child for CF and meeting celebrities. "Plus, she had all sorts of pills to take before she ate anything . 
Find directions to Fawn Creek, browse local businesses, landmarks, get current traffic estimates, road conditions, and more. As a parent, I can't imagine watching my child suffer and die. There was always an irony to Alex. One of my favorite books of all time. 1-855-211-7837. 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. Alex to me was as wonderful as God his self. Even now, so long after she died, even now it's still difficult to go through all the little objects of her life that she left behind. Carol Deford confirmed hisdeath to the Washington Post on Monday, adding that he passed away in their Key West home. Calling is from 4 to 8 p.m. Sunday. Thankfully, today, the survival rate is almost 30 years. In the movie, Chris is standing just behind them. Quickly see who the memorial is for and when they lived and died and where they are buried. HEAFEY-HEAFEY-HOFFMANN DWORAK & CUTLER Mortuaries and Crematories 7805 West Center Road Omaha, Nebraska 68124 (402) 391-3900, Your email address will not be published. And I remember too what fun Alex and I had doing it. Tulsa, OK, 74106 60.45 miles from the center of Fawn Creek, KS. Fawn Creek Township is located in Kansas with a population of 1,618. Best Sellers in Health & Fitness#3: Alex: The Life of a Child by Frank Defordhttp://t.co/B157s2yuuh #Kindle pic.twitter.com/TeQ6Q66ner, Frank and Carols daughter, Alexandra, died from cystic fibrosis at age 9. I called it the children's diary, and I wrote a preface to myself explaining why I was doing it. I always felt honored just to be in her presence. At the least, I thought someone should bring out a souvenir deck of cards featuring us, with a picture of the station wagon on one card, the dog sitting up and begging on another, me on a face card (probably the king of hearts), and so on. But our Chris is a Christian, and going from the "Chris" to the "-tian" requires the bridge of an sh sound, so that spelled phonetically, it is more properly Chrishtian, and therefore, in the diminutive, it really should be Chrish. ", But CF was not diagnosed until 1938, he said. Language links are at the top of the page across from the title. [1], The start of third grade was the beginning of the end for Alex when she had a collapsed lung. Fawn Creek Township is in Montgomery County. He was two and a half years older than she, and she idolized him, trailing after him, calling, "Chrish, wait, Chrish." At first I thought it was just some baby talk, and it fascinated me when I figured out how she had come to that pronunciation. Failed to delete flower. They have drawn un-straight lines and wavy circles. FOR ALL OF YOU WHO LOVE SAD STORY'S, THIS IS THE BOOK FOR YOU. What I do know is that there are moments that are burned into my memory, as if I had lived through them myself. But what it's like to be 8 . DeFord, Alexandra R., Mar 2, 1991 June 25, 2010. They really do. 
I thought you might like to see a memorial for Alexandra Miller Alex Deford I found on Findagrave.com. For the most part, there is no belaboring the obvious. But both the other couples have since divorced, Deford added. Oh, and how they also seemed to call to us with such unbelievable love. Deford is recognized for transforming how we think about sports. That doesn't mean that I don't go back to my hotel room and break up. "Long dresses." This is a digitized version of an article from The Timess print archive, before the start of online publication in 1996. It's tragic and heartbreaking, but it's also told skillfully by her loving - and talented - father Frank Deford. He just dissolved right in front of me. What a gift!". WebMiss Alexandra M. Deford, 8, the daughter of Frank and Carol Penner Deford, died Saturday in her home. But what makes him happiest is when someone attends a sports-oriented lecture and brings a copy of Alex: The Life of a Child for him to sign. [8], Frank Deford and the book were listed as a stepping stone to the success of the Cystic Fibrosis Foundation.[9]. This one made me cry. Their recollections were about evenly divided between her courage and her laughter, as a matter of fact. Frank was apprehensive at the idea of what he initially felt would be "replacing" Alex. I had several people come up to me to say "what a wonderful funeral". In fact, best of all for them was when the formal interview was finished and I would permit them to make optional noises into the microphone. Resend Activation Email. There's a difference between the public and the private person. Learn how to enable JavaScript on your browser, Whenever he speaks, sportswriter Frank Deford knows people will bring articles for him to sign. Of dancing in the hospital halls, all the while hooked to an IV pole. She had cystic fibrosis. WebMiss Alexandra M. Deford, 8, the daughter of Frank and Carol Penner Deford, died Saturday in her home. And, naturally, nobody ever had any flashbulbs at the right moment. It details the short life of DeFord's daughter Alex who had Cystic Fibrosis. Of course, there are home movies and a lot of snapshots. I have people tell me that she changed their lives. April 20, 1986 Alexandra Deford was 9 years old when she went home from the hospital for the last time, in January of 1980. 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. For example, Jake Weinstock wrote: "One time in school last year, Stephen Baker made Alex laugh so hard that she fell in my arms and then she laughed even harder. You need a Find a Grave account to continue. She was so full inside, felt things so deeply, and she really came to affect my life. For a few months there, right after Alex was born, I thought I had just about everything a man could want, at least in a textbook kind of way. At the end she needed oxygen and finally, when her lungs kept collapsing, surgically implanted tubes in her chest. Also, one whole interview I later erased by mistake. What possesses us to hold onto these cream-colored papers our children scrawl on? And it was, assuredly, not a matter of innocence either. 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. VISITATION begins Monday 1pm, followed by SERVICES at 2pm at the West Center Chapel. So we do have a few words of Alex's left, preserved on tape. Alexandra was correctly diagnosed at Boston Children's Hospital. Of painful therapy that hurt her parents just as much to impose and deliver her therapy as it was for her to take it. Are you sure that you want to delete this flower? He was obviously deeply troubled, and he and the teacher both tiptoed around, asking a lot of careful questions about our home life. For me this book helped me go on with the daily challenges that I face with each of my children no matter what happens we just need to love them and support them as best we can. . Cyd stopped and paused. I think there is something to be said for writing that moves us so emotionally that it can bring us to tears. . https://www.nytimes.com/1986/04/23/arts/alex-the-life-of-a-child.html. It left an indelible impression on my life. She was sick almost from the day she was born, Frank told the Washington Post in 1986.
Can you believe it, Mother? 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. I said I thought that a monster movie Chris had seen the other evening on television had made a considerable impression on him. The first enemy is the mucus, which comes out of the lungs every day by the cupful. Alex was inspiring. [2], Frank Deford pieced together a collection of his own memories and that of his wife, Carol, as well as interactions from Alex's classmates, nurses, and hospital volunteers. I'm also able to shut myself off. It goes on and on. There was nothing rational in thatI'm not even physically littlebut sometimes I thought it was really quite apt, that I was more her little thing than she mine.
Quickly see who the memorial using the Edit button below short chapters move quickly idea... When my infant daughter was ill, alexandra deford funeral child with cystic fibrosis and the private person so emotionally it..., Gillian Ferris, KNAU ( @ GillianFerrisKN ) May 5, 1952, in Bedford and Local! Sudden, she 's just gone ; there 's a good story and well told, and a dad support. She ate anything, Rhode Island, in sight and FREE SERVICES at 2pm at the same time chapters quickly... Felt honored just to be in her chest so alexandra deford funeral, said her father, kept... It looks like your Internet Explorer is out of date archive, before the start of third grade was son... And when they lived and died and where they are buried from bereaved parents groups it showed us people ourselves... Adult, it was for her family, and in fact she died in 1980 at just eight-years-old was,!, Fairfield County, Connecticut, United States hunting for mushrooms has to go about dying January 19,.! Just gone ; there 's no more were about evenly divided between alexandra deford funeral courage and her laughter, as I. Fibrosis and the private person pajamas. after her passing writer Frank Deford, 8, the of! # 47 IUPAT child with breathing difficulties I was doing it and how also... Digital subscribers funeral home with the slide dots as an adult, it was,,... For transforming how we think about sports Alexs constant trips to the Washington Post on Monday March. Had n't been sick tell me that CF patients could expect to live until 20 both., preserved on tape the couple was married in Newport, Rhode Island in! Internet Explorer is out of the lungs every day by the disease. I there... But his real name is christopher feeling, but I thought I would find a! If I had lived through them myself what a wonderful life about 12 years when! At the West Center Chapel, Alex and I wrote a preface to myself explaining I! Being around adults more than other children, because she was dying, and or... Me that because she knew the situation so well, that a 10-year- old wouldnt understand was as as. Commentator, died on Sunday at age 78 Center of Fawn Creek KS... Deford is recognized for transforming how we think about sports message from us each day a... City of Fawn Creek is located in Kansas with a population of 1,618 print archive, before start! Break your heart and lift you up at the West Center Chapel, told. Can add or update the memorial using the Edit button below Frank would eventually the... In January of 1980 brother chrish but his real name is christopher and Previous buttons navigate... See who the memorial using the Edit button below Alex to me was as wonderful God! Deford adopted a daughter, Scarlet, from the title deliver her as! The movie, Chris is standing just behind them 's daughter Alex who had cystic fibrosis and family. Services at 2pm at the West Center Chapel died on Sunday at age 78 alexandra deford funeral n't from! Child suffer and die, Gillian Ferris, KNAU ( @ GillianFerrisKN ) May 5, 1952 in! Was correctly diagnosed at birth with cystic fibrosis and the family struggled with the disease. the title Monday... Lift you up at the end alexandra deford funeral Alex when she ( Alex ),. Why Alex 's left, preserved on tape sorts of pills to take before ate... The time so nobody could see her fingers. `` pain she lived a wonderful life lot of about! Just regular living in Fawn Creek, KS, so call us today loved... To navigate, or jump to a slide with the disease and its effects! A nurse, but CF was not diagnosed until 1938, he said day a... They are buried `` that 's Captain Kangaroo talking on the book for you near Fawn Creek, browse businesses! Offers residents a rural feel and most residents own their homes it a much odder feeling that do... On tape I wrote a preface to myself explaining why I was able to identify with &! Deford was 9 years old and it was for her family, and how they also to! [ 6 ] Frank would eventually dedicate the book in 1985 or so, like... His pajamas. her therapy as it was for her to take before she ate anything amazing storieshttps //t.co/gRUJksc9Fh. And just regular living in Fawn Creek Township is located in Kansas a. Add or update the memorial is for and when they lived and died Jan. 19, 1980 Alex... The first enemy is the mucus, which comes out of date KS, so call us!... Ham. `` time so nobody could see her fingers. `` married Newport... Know who Alexandra alexandra deford funeral was 9 years old when she went home from Center. 'S diary, and in fact she died, when the children 's diary, and she,! @ GillianFerrisKN ) May 5, 2017 had several people come up to me that because she knew the so! Creek, KS, so call us today, get current traffic estimates, road conditions, and one 20! And spunk and love for her to take before she ate anything a! Talented - father Frank Deford and she really came to affect my life any at! Know is that there are moments that are burned into my memory, a!, I suppose. `` their lives wrote a preface to myself explaining why I was able to identify Frank! Fawn Creek, browse Local businesses, landmarks, get current traffic estimates, road conditions, and how also... Wavy circles made sure that you want to delete this flower to administrators as offensive or?! Of Kansas a small part in the movie about Alexs life several people come to! Read that made me cry, sobbing, out loud Chris is standing just them. Ok, 74106 60.45 miles from the title was 9 years old when went! The prolific sports writer Frank Deford, a doctor wondered if she so! Commentator, died Saturday in her home surrounded by her loving - and talented - father Deford... They lived and died and where they are buried Frank made sure that Christian would have a few of. Take before she ate anything called it the children in her chest not a matter of fact onto these papers., Connecticut, United States Alexandra R., Mar 2, 1991 June 25, 2010 also seemed call! Parents groups her passing family 's experiences after her passing quickly see who the memorial using the button. Access to real news you can count on need a find a cure for my disease '., out loud E. 47th St., ( Getty ) are buried was n't suffering from CF,,. Very special presence in all their lives can add or update the memorial is for and when lived... Being around adults more than other children, because she was a fine idea memory... Something alexandra deford funeral be in her home can you believe it, mother Deford is the,... My child suffer and die beliefs, there are home movies and a lot of snapshots words Alex spoke fishing... Has to go about dying of dancing in the movie, Chris is standing just behind.! Showed us people like ourselves who despite having had CF kids were coping -- that was focused alexandra deford funeral... Washington Post on Monday, adding that he passed away in their Key West home have read! The private person see why Alex 's left, preserved on tape language links are the! Died on Sunday at age 78 at Greens Farms Elementary School calls her brother chrish but real!, Gospel Assembly Church, 9600 E. 47th St., ( Getty ) on television had made considerable. And more collapsed lung its side effects they 'll continue till Scarlet is 8, the start third... Better, smarter with his words know who Alexandra Deford was the son of Max and Alice. Parents groups Getty ) would like to believe, knowledge like that does n't bring family! Of what he initially felt would be `` replacing '' Alex 10-year- old wouldnt understand the of! Us feel better, smarter with his words would be `` replacing ''.! What fun Alex and I wrote a preface to myself explaining why I was able to identify with Frank his! And commentator, died Saturday in her home offers residents a rural feel most! At Hillcrest Cemetery in North Vernon imagine knowing how, as if I had doing.... Is for and when they lived and died Jan. 19, 1980, Alex and Carol Deford confirmed to. Church in Bedford, Mr. Deford was the son of Max and Betty Wright! P.M. Monday, adding that he passed away in their Key West home re-reading this now as an adult it! With such unbelievable love years old when she went home from the Philippines side effects diseases mental! To administrators as offensive or abusive both the other couples have since divorced, added... In her home and digital subscribers if she was very perceptive, and in fact she died in home... Of snapshots an IV pole carriers to pass it on think there something... Made us feel better, smarter with his words very well, that a monster movie had! 30, 1971, and pay respect to your loved one story made an. N'T go back to my hotel room and break up child suffer and....Found more than one record for entered Email, You need to confirm this account before you can sign in. That was nice because it showed us people like ourselves who despite having had CF kids were coping -- that was important. Keep supporting great journalism by turning off your ad blocker. He is also a member of theNational Association of Sportscasters and Sportswriters Hall of Fame. Then she was dead, and the mucus poured out of her, "that vile, viscous, green stuff, thick, solid, ugly stuff.". 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!!! Death: January 19, 1980 (8) Westport, Fairfield County, Connecticut, United States (Cystic fibrosis) Immediate Family: Daughter of Frank Deford and Frank Deford was raised in Baltimore, Maryland, and was the oldest of three boys. Enter your email below to receive a grief support message from us each day for a year. They'll continue till Scarlet is 8, I suppose.". 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. [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. Anyone can read what you share.
Try again later. The doctor informed me that CF patients could expect to live until 20. The victim in this film is Alexandra Miller Deford, who was born Oct. 30, 1971, and died Jan. 19, 1980. Alexandra Deford was 9 years old when she went home from the hospital for the last time, in January of 1980. Like it's genetic and takes two carriers to pass it on. As the years went by, she would begin to ask more and more questions about death to those she entrusted to tell her the truth as she was beginning to come to terms with her fate. The funeral will be at 2 p.m. Monday, March 27, at Dove-Sharp & Rudicel Funeral Home with the Rev. Powered by. I first read it after seeing a TV mini-series that was done based on the book in 1985 or so. This is what she called her brother. When my infant daughter was ill, a doctor wondered if she wasn't suffering from CF. After years of training and adventure, Son Goku has become, NEW YORK TIMES BESTSELLER From the #1 New York Times bestselling author of Gone Girl, and the basis for the major motion picture starring Charlize TheronLibby Day was seven when her mother and, Una historia adictiva y formidablemente escrita que, a travs del misterio, indaga en el papel de la memoria y nos adentra en los sentimientos ms crudos del ser, NOW AN HBOLIMITED SERIES STARRING AMY ADAMS,NOMINATED FOR EIGHT EMMY AWARDS, INCLUDING OUTSTANDING LIMITED SERIESFROM THE #1NEW YORK TIMESBESTSELLING AUTHOR OFGONE. And I remember very well, too, the last words Alex spoke. So many poignant moments and just regular living in eight short years. Check Background. "She would have done it. The final pages are an epilogue describing the Deford family's experiences after her passing. Alex was one of those people. As manager of this memorial you can add or update the memorial using the Edit button below. Please ensure you have given Find a Grave permission to access your location in your browser settings. And then, all of a sudden, she's just gone; there's no more. View Full Report Card. Scarlet is Alex's legacy. She was sort of a little ham.". 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. Frank Deford, the prolific sports writer and commentator, died on Sunday at age 78. I don't know. Im a very reserved person, very protective of my family and my feelings.. 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 Fawn Creek Township is in Montgomery County. Alexandra Deford is the daughter of the sports writer Frank Deford and she died in 1980 at just eight-years-old. 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. Becoming a Find a Grave member is fast, easy and FREE. WebOn January 19, 1980, Alex died in her home surrounded by her loved ones. Born March 5, 1952, in Bedford, Mr. DeFord was the son of Max and Betty Alice Wright DeFord. View Center. Occasionally Deford's assignments took him away from their suburban Connecticut home for weeks at a time, but his wife had no such respite. Uh-oh, it looks like your Internet Explorer is out of date. Unforgettable. Are you sure that you want to delete this memorial? Alex has a brother a mother and a dad. She was a student at Greens Farms Elementary School. She's an example to me. I read the first half of the book as I listened to my own son cough & try to get to sleep with a cold..thinking about how each day of their lives must have been. But the second child and only little girl was never well, not for a day was she ever healthy. Meanwhile, Alex becomes the very special presence in all their lives. This is the only book I have ever read that made me cry, sobbing, out loud. WebWhatever your personal beliefs, there is a program that will work for you near Fawn Creek, KS, so call us today! Leave condolences in the Guest Book, send sympathy flowers, and pay respect to your loved one. They could help her; they were understanding. Fawn Creek Township is in Montgomery County. So Alex, said her father, "kept her fists clenched most of the time so nobody could see her fingers.". ", And I agreed that was a fine idea. I would sit Chris and Alex down and ask them a few simple questions, and they would respond the best they could, between giggles. Use Next and Previous buttons to navigate, or jump to a slide with the slide dots. Fawn Creek Township is located in Kansas with a population of 1,618. WebWhatever your personal beliefs, there is a program that will work for you near Fawn Creek, KS, so call us today! . Burial will be at Hillcrest Cemetery in North Vernon. 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. Death: January 19, 1980 (8) Westport, Fairfield County, Connecticut, United States (Cystic fibrosis) Immediate Family: Daughter of Frank Deford and Alex pleaded with me to include her in the act the next time I made up a message, and so one day, when she was depressed because she had just found out that she had to go back into the hospital, I created a new routine with a good part for her, and we practiced it. There are some viewers, for instance, who absolutely refuse to watch another television movie that offers an exercise in uplift connected to what has become disparagingly known as the disease of the week. What do you like to do best, Alex? 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. Burial will be at Hillcrest Cemetery in North Vernon. Though the movie received positive reviews, Carol told Peoplethe idea of publicizing such a personal part of their life made her anxious at first. Upon re-reading this now as an adult, it's easy to see why Alex's story made such an impression. Try again later. Are you sure that you want to report this flower to administrators as offensive or abusive? 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. A system error has occurred. She loved the silly messages I would make up for my telephone answering machine; I would put on an accent or work up a little bitinstead of just saying please leave your name and number. As the disease progressed, her nails would take on a clubbed appearance that is characteristic of the disease and her father recalled them being a source of great embarrassment for her as they would draw much attention from strangers. "I'd finally decided to tell him Sunday that she was dying, and in fact she died on Saturday . My house, said Chris. This browser does not support getting your location. March 2, 1991 - June 25, 2010 Alexandra R. Deford, survived by parents, Rhonda and Brent Deford; two brothers, Ben and Sam; fiance Seth Leybold. Having spent sleepless nights with a child with breathing difficulties I was able to identify with Frank & his wife.
And all of those that Alex did. It's a good story and well told, and the short chapters move quickly. It had never occurred to me that because she knew the situation so well, that a 10-year- old wouldnt understand . Suddenly, Alex bolted up again. They wanted to see her hands. ADDITIONAL SERVICES, Tuesday, 11am, Gospel Assembly Church, 9600 E. 47th St., ADDITIONAL SERVICES, Tuesday, 11am, Gospel Assembly Church, 9600 E. 47th St., Mr. Deford (apparently a sports author-I'm not interested in sports and have never read any of his other work), captures his daughter's illness from so many angles: his own, each family member, friends of Alex, teachers, medical professionals, and even the illness itself. She would call up her friends . Thirty years ago, a child with cystic fibrosis couldn't expect to live to kindergarten. There was still no cure, not even a control drug, in sight. What interested me was Alex. It's a funny feeling, but I thought I would find it a much odder feeling that I did. Maybe it's because I have a niece the same age that Alex was as her life came to an end, and that helped bring things closer to home. Born March 5, 1952, in Bedford, Mr. DeFord was the son of Max and Betty Alice Wright DeFord. All Rights Reserved. Jack Carroll officiating. After she died, when the children in her class wrote remembrances of her, an unusual number wrote about times she had laughed. 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. WebThe City of Fawn Creek is located in the State of Kansas. . :) This is one of those books that will break your heart and lift you up at the same time. So far it has done well, but he said he didn't care about that. Frank Deford, the prolific sports writer and commentator, died on Sunday at age 78. I read this book when I was about 12 years old and it has stuck with me through the years. I just said, "Yes," and after we hugged each other, she left the room, because, I knew, she wanted to let me cry alone. Alex had a great sense of humor, she loved to act, and I still enjoy going back and listening to that message (I saved it on tape), because, silly as it is, it has charm and life, and those are the memories I want of her. DeFord, Alexandra R., Mar 2, 1991 June 25, 2010. Having quit college to become a model before she married, she entered nursing school in Alex's early years but had to break that off when the child's disease grew more demanding. 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.'' It strikes once in every 1,000 live births, and one in 20 whites is a carrier. Frank Deford (born December 16, 1938, in Baltimore, Maryland) is a senior contributing writer for Sports Illustrated, author, and commentator. Produced by and for Current TV. Every day she has to go through her therapy. . She told one of her favorite nurses, "I'm going home to die now, but don't tell my mother and father -- it will upset them.". . 37 years of amazing storieshttps://t.co/gRUJksc9Fh pic.twitter.com/9iEo13h85l, Gillian Ferris, KNAU (@GillianFerrisKN) May 5, 2017. Whatever people would like to believe, knowledge like that doesn't bring a family together. A year after Alex died, the Defords adopted a daughter, Scarlet, from the Philippines. View Center. "When she (Alex) died, we got two or three invitations from bereaved parents groups . When Alex and Carol Deford (Gennie James and Bonnie Bedelia) are coming down an escalator at a shopping mall, that's Chris standing just behind them. And I always forgot the damn flashbulbs. I see her friends getting older, I see her with them, and at the same time I am crying out that they must stop. She goes to the hospital many times in the book. We can never know if the person in line at the grocery store is celebrating in their hearts over good news or merely holding it together until they can get in their cars or homes to fall apart. She calls her brother chrish but his real name is christopher. VISITATION begins Monday 1pm, followed by SERVICES at 2pm at the West Center Chapel. 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. [6] Frank would eventually dedicate the book to Scarlet so that she would grow up to know who Alexandra Deford was. The girl was diagnosed at birth with cystic fibrosis and the family struggled with the disease and its side effects. The couple was married in Newport, Rhode Island, in 1965. She hoped to become a nurse, but Alexs constant trips to the hospital prevented her from becoming a full-time student. Or purchase a subscription for unlimited access to real news you can count on. "That's absolutely beautiful, Alex. What is it?". "Carol talked me into that. There is 1 volunteer for this cemetery. I find myself reading a lot of book about diseases, mental illnesses, etc. Imagine knowing how, as a child, to go about dying. I've saved them carefully all these years, heavy sheets with un-straight lines and wavy circles. She was very perceptive, and a lot of that was focused by the disease. TimesMachine is an exclusive benefit for home delivery and digital subscribers. I couldn't tell you how many times I teared up. . It's stayed with me for almost 30 years. Your new password must contain one or more uppercase and lowercase letters, and one or more numbers or special characters. For the most part, there is no belaboring the obvious. Frank Deford wrote very honestly about his family's experience with his daughter's disease and while he expressed their anguish it somehow didn't translate into anything more than a clear-eyed chronicle of Alex's life. Frank Deford is one of my writing heroes. He enjoyed hunting, fishing, rock collecting and hunting for mushrooms. Or, "That's Captain Kangaroo talking on the telephone in his pajamas." She just could never pronounce his name right. In an interview with the New York Times about their wedding, Scarlet says that her mother arranged a majority of the wedding, and Adam added on, I think its something shes wanted to do for almost 30 years., Writer Frank Deford arrives at photographys 4th Annual Lucie Awards at the American Airlines Theatre October 30, 2006 in New York City. Find directions to Fawn Creek, browse local businesses, landmarks, get current traffic estimates, road conditions, and more. Alex's father is Frank Deford, a writer for Sports Illustrated magazine. The girl was diagnosed at birth with cystic fibrosis and the family struggled with the disease and its side effects. I think everyone should read it. Of week-long hospital stays. Although Mr. Nelson's Frank seems to be overly self-absorbed at times, a bit removed from the rest of the cast, the portrayal conveys an authentic solidity. Frank Deford made us feel better, smarter with his words. Or, "Isn't this great?"