Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 Hi Ya'll, My daughter was diagnosed in 1984 at the age of 8 months, and I think the book(, the life of a child, by DeFord) came out soon after that, I read it and I really shouldn't have. It really scared me, since was still a baby and I had no idea if she was going to end up like or what. So as the years have gone by and my daughter has had her ups and downs, they have been upsetting but nothing like what they went through with and losing her at age 8. But I definitely wouldn't recommend new parents read it unless they are really strong. Take it for what it is, a loving memoir of a fathers child. Not as something that will happen to your cf child. I have a lot of books on cf and other diseases but I have some kind of sick need to read about it. I will read anything cf. Even though most of them end tragically. But there is a relatively new book called " The Spirit of Lo " and it is really good and more realistic for our times. Lo has many struggles but she shines through and becomes a wonderful spokesperson for cf and raises tons of money. Its a great book, you can get it through Amazon. Also there is a book one of the cystic-l guys wrote, its by Andy Lipman and its called " Alive at 25 " (I think, its something like that) It is a really good book too, it tells Andy's story of how he fell into depression and neglected his treatments and meds and found out he needed to take care of himself. He is writing another book now, I think he said it was going to be fiction. There are more, but try those 2 to start with. Just my recommendation. They are good and NOBODY DIES! oh except Andys baby sister who died before Andy was born if I am remembering that right. love, M mom of age 19wcf and Nick age 21 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 A more positive book about CF is called The Spirit of Lo about Lo Detrich who is still around and very active in increasing awareness of CF. Also Give me one Wish by Jackie Gordon (a more difficult read and very " open " ). Kathy G. Re: Re: Good books??? > Hi Ya'll, > My daughter was diagnosed in 1984 at the age of 8 months, and I think > the book(, the life of a child, by DeFord) came out soon > after that, I read it and I really shouldn't have. It really scared me, > since was still a baby and I had no idea if she was going to end up > like or what. So as the years have gone by and my daughter has had her > ups and downs, they have been upsetting but nothing like what they went > through with and losing her at age 8. But I definitely wouldn't > recommend new parents read it unless they are really strong. Take it for > what it is, a loving memoir of a fathers child. Not as something that will > happen to your cf child. > > I have a lot of books on cf and other diseases but I have some kind of sick > need to read about it. I will read anything cf. Even though most of them > end tragically. But there is a relatively new book called " The Spirit of > Lo " and it is really good and more realistic for our times. Lo has many > struggles but she shines through and becomes a wonderful spokesperson for cf > and raises tons of money. Its a great book, you can get it through Amazon. > Also there is a book one of the cystic-l guys wrote, its by Andy Lipman and > its called " Alive at 25 " (I think, its something like that) It is a really > good book too, it tells Andy's story of how he fell into depression and > neglected his treatments and meds and found out he needed to take care of > himself. He is writing another book now, I think he said it was going to be > fiction. > > There are more, but try those 2 to start with. Just my recommendation. > They are good and NOBODY DIES! oh except Andys baby sister who died before > Andy was born if I am remembering that right. > love, > M > mom of age 19wcf and Nick age 21 nocf > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Don't forget Stevie's Secret - excellent for teen girls and their friends! Re: Re: Good books??? > > > > Hi Ya'll, > > My daughter was diagnosed in 1984 at the age of 8 months, and I > think > > the book(, the life of a child, by DeFord) came out soon > > after that, I read it and I really shouldn't have. It really scared me, > > since was still a baby and I had no idea if she was going to end up > > like or what. So as the years have gone by and my daughter has had > her > > ups and downs, they have been upsetting but nothing like what they went > > through with and losing her at age 8. But I definitely wouldn't > > recommend new parents read it unless they are really strong. Take it for > > what it is, a loving memoir of a fathers child. Not as something that > will > > happen to your cf child. > > > > I have a lot of books on cf and other diseases but I have some kind of > sick > > need to read about it. I will read anything cf. Even though most of them > > end tragically. But there is a relatively new book called " The Spirit of > > Lo " and it is really good and more realistic for our times. Lo has many > > struggles but she shines through and becomes a wonderful spokesperson for > cf > > and raises tons of money. Its a great book, you can get it through Amazon. > > Also there is a book one of the cystic-l guys wrote, its by Andy Lipman > and > > its called " Alive at 25 " (I think, its something like that) It is a really > > good book too, it tells Andy's story of how he fell into depression and > > neglected his treatments and meds and found out he needed to take care of > > himself. He is writing another book now, I think he said it was going to > be > > fiction. > > > > There are more, but try those 2 to start with. Just my recommendation. > > They are good and NOBODY DIES! oh except Andys baby sister who died > before > > Andy was born if I am remembering that right. > > love, > > M > > mom of age 19wcf and Nick age 21 nocf > > > > > > > > ------------------------------------------- > > The opinions and information exchanged on this list should IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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