RE: Re:MDS Regarding genetic testing results

[Guest guest]

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This is something I have been thinking about a lot lately. I wonder if I

should freeze some of my eggs so that will have the chance to be a

mommy to a " normal " child. We don't have another daughter and she only has

one female cousin, but I am assuming it is costly and there is no chance

that one of my eggs is not what caused the mosaicism. Should I wait and see

if 20 years down the road the technology exists to ensure that the child

only has 21 chromosomes? This is really an issue to me - as I want my

daughter to have every opportunity to have a " normal " life and one of the

most fulfilling things in my life has been being a Mommy.

Darlene (Mom to , 5 and , 3)

Re: " MDS " Regarding genetic testing results

Dear ,

I am curious about something, did Ariel's genetesist (I'm sure this

is not spelled correctly), ever tell you that if she ever had

children, she would most likely have a (full) DS child? After we

found out about Jakob's MDS, we went to see a genetisit? because we

wanted more children and they she told us that Jakob would very

likely have a DS child. Which really upset me, considering we really

don't know what his future will be like. (Although, who does know

what any child's future will hold?) Anyway, I'm rambling again.

Thanks in advance!!

(Mom to Jakob,7)

Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

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MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

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[Guest guest]

Hi ,

I had the same question when I found out about Tyler. He told me that most, almost all DS men can not have children. He told me that Tyler, "if he can perform," most likley could have children but only have about a 1-2% chance of having a child with DS, but a woman with DS can have children with a HIGH chance of having a child with DS. But he did say right after that ALL kids are different and no one will know until he is older.

Debra (mother to Troy 7 ADHD and Tyler 5 MTDS)

mommy17744 wrote:

Dear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would very likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Darlene, Boy, this is something that has been bothering me also. I never thought of your idea; it's a good one. The day she told us he would most likely have a DS child, I cried the whole way home. But then I get to wondering, will he be able to take care of himself let alone a child with DS? This whole thing can get me so depressed. Today I have been thinking that I wish we could have another child so that he does not grow up alone, because once we are gone, who is going to look out for him, if he doesn't have a sibling? I have even been considering adopting a child, we talked about this before, but is this the right reason to bring another child into our family? (Although we would love to have another child, and I guess after 2 miscarriages, it is not in our future) Tomorrow we take Jakob for a checkup at the doctors and I plan to ask him what he thinks about some of these things. I have been driving myself crazy today worrying about all of this. (Mom to Jakob,7) RE: Re:"MDS" Regarding genetic testing results - This is something I have been thinking about a lot lately. I wonder if Ishould freeze some of my eggs so that will have the chance to be amommy to a "normal" child. We don't have another daughter and she only hasone female cousin, but I am assuming it is costly and there is no chancethat one of my eggs is not what caused the mosaicism. Should I wait and seeif 20 years down the road the technology exists to ensure that the childonly has 21 chromosomes? This is really an issue to me - as I want mydaughter to have every opportunity to have a "normal" life and one of themost fulfilling things in my life has been being a Mommy.Darlene (Mom to , 5 and , 3)-----Original Message-----From: mommy17744 Sent: Thursday, July 25, 2002 2:32 PMTo: MosaicDS Subject: Re:"MDS" Regarding genetic testing resultsDear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would very likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Hi Debra, Now I am curious, how could two different counselors tell us both something different? Who do we believe? Someone has to know the answer to this question. She had told us that he would have a DS child, it would be better to think that he had only a 1-2% chance of having this child than to think that he definitely will. Oh boy, now I am confused. Thanks for your input, though! (Mom to Jakob,7) Re: Re:"MDS" Regarding genetic testing results Hi , I had the same question when I found out about Tyler. He told me that most, almost all DS men can not have children. He told me that Tyler, "if he can perform," most likley could have children but only have about a 1-2% chance of having a child with DS, but a woman with DS can have children with a HIGH chance of having a child with DS. But he did say right after that ALL kids are different and no one will know until he is older. Debra (mother to Troy 7 ADHD and Tyler 5 MTDS) mommy17744 wrote: Dear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would very likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

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Let me know what the Dr says - I am curious. This has just been weighing on my mind a lot and if I am going to do it - I need to do it soon as I am almost 35.

Darlene

-----Original Message-----From: LISA FAUST Sent: Thursday, July 25, 2002 2:52 PMTo: MosaicDS Subject: Re: Re:"MDS" Regarding genetic testing results

Darlene,

Boy, this is something that has been bothering me also. I never thought of your idea; it's a good one. The day she told us he would most likely have a DS child, I cried the whole way home. But then I get to wondering, will he be able to take care of himself let alone a child with DS? This whole thing can get me so depressed. Today I have been thinking that I wish we could have another child so that he does not grow up alone, because once we are gone, who is going to look out for him, if he doesn't have a sibling? I have even been considering adopting a child, we talked about this before, but is this the right reason to bring another child into our family? (Although we would love to have another child, and I guess after 2 miscarriages, it is not in our future) Tomorrow we take Jakob for a checkup at the doctors and I plan to ask him what he thinks about some of these things. I have been driving myself crazy today worrying about! all of this.

(Mom to Jakob,7)

RE: Re:"MDS" Regarding genetic testing results

- This is something I have been thinking about a lot lately. I wonder if Ishould freeze some of my eggs so that will have the chance to be amommy to a "normal" child. We don't have another daughter and she only hasone female cousin, but I am assuming it is costly and there is no chancethat one of my ! eggs is not what caused the mosaicism. Should I wait and seeif 20 years down the road the technology exists to ensure that the childonly has 21 chromosomes? This is really an issue to me - as I want mydaughter to have every opportunity to have a "normal" life and one of themost fulfilling things in my life has been being a Mommy.Darlene (Mom to , 5 and , 3)-----Original Message-----From: mommy17744 Sent: Thursday, July 25, 2002 2:32 PMTo: MosaicDS Subject: Re:"MDS" Regarding genetic testing resultsDear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would ver! y likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

I have been told and read that men with DS absolutely cannot father children (always sterile), but can enjoy sex. Women with DS can conceive. I'm not sure about men with MDS. It bothers me to think aa person shouldn't have kids if the kids will have DS; after all, the person has DS themselves, so what kind of message is that? If they can't handle parenting a child with DS, can they handle any child? And if they aren't facing a difficult disability, won't they be able to decide some of these things for themselves? I know some parents have chosen sterilization for their adolescent girls with DS. This is hard to think about, too. I really think that this is a tough issue that each individual with DS or MDS and his or her family will have to decide for themselves based on their situation, values and faith. It's certainly nice to have people to mull it over with, though. Good luck.

RE: Re:"MDS" Regarding genetic testing results

- This is something I have been thinking about a lot lately. I wonder if Ishould freeze some of my eggs so that will have the chance to be amommy to a "normal" child. We don't have another daughter and she only hasone female cousin, but I am assuming it is costly and there is no chancethat one of my eggs is not what caused the mosaicism. Should I wait and seeif 20 years down the road the technology exists to ensure that the childonly has 21 chromosomes? This is really an issue to me - as I want mydaughter to have every opportunity to have a "normal" life and one of themost fulfilling things in my life has been being a Mommy.Darlene (Mom to , 5 and , 3)-----Original Message-----From: mommy17744 Sent: Thursday, July 25, 2002 2:32 PMTo: MosaicDS Subject: Re:"MDS" Regarding genetic testing resultsDear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would very likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

I know being a Mom can be difficult and being a Mom of a special needs child is more difficult and what I desperately want for my daughter is to give her every opportunity to live her life and give her every opportunity to succeed in life and to make the way smoother if possible. I don't want her to be limited by anything but herself. I personally would never sterilize her and remove the opportunity for this joy.

That's all - I am not saying she could not raise a child with DS - I am just saying my time is limited to make this decision and it is very difficult for me. Who knows how advanced we will be in 20 years or how not.

-----Original Message-----From: B DeHoff Sent: Thursday, July 25, 2002 4:06 PMTo: MosaicDS Subject: Re: Re:"MDS" Regarding genetic testing results

I have been told and read that men with DS absolutely cannot father children (always sterile), but can enjoy sex. Women with DS can conceive. I'm not sure about men with MDS. It bothers me to think aa person shouldn't have kids if the kids will have DS; after all, the person has DS themselves, so what kind of message is that? If they can't handle parenting a child with DS, can they handle any child? And if they aren't facing a difficult disability, won't they be able to decide some of these things for themselves? I know some parents have chosen sterilization for their adolescent girls with DS. This is hard to think about, too. I really think that this is a tough issue that each individual with DS or MDS and his or her family will have to decide for themselves based on their situation, values and faith. It's certainly nice to have people to mull it over with, though. Good luck.

RE: Re:"MDS" Regarding genetic testing results

- This is something I have been thinking about a lot lately. I wonder if Ishould freeze some of my eggs so that will have the chance to be amommy to a "normal" child. We don't have another daughter and she only hasone female cousin, but I am assuming it is costly and there is no chancethat one of my eggs is not what caused the mosaicism. Should I wait and seeif 20 years down the road the technology exists to ensure that the childonly has 21 chromosomes? This is really an issue to me - as I want mydaughter to have every opportunity to have a "normal" life and one of themost fulfilling things in my life has been being a Mommy.Darlene (Mom to , 5 and , 3)-----Original Message-----From: mommy17744 Sent: Thursday, July 25, 2002 2:32 PMTo: MosaicDS Subject: Re:"MDS" Regarding genetic testing resultsDear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would very likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

I wrote another post explaining what I meant in my earlier message. Darlene and I have been e-mailing each other and discussing certain things and I guess in our doing this we maybe confused a lot of you. Sorry about that, its hard when you only get half of the conversation. I hope you now understand!!!!! RE: Re:"MDS" Regarding genetic testing results - This is something I have been thinking about a lot lately. I wonder if Ishould freeze some of my eggs so that will have the chance to be amommy to a "normal" child. We don't have another daughter and she only hasone female cousin, but I am assuming it is costly and there is no chancethat one of my eggs is not what caused the mosaicism. Should I wait and seeif 20 years down the road the technology exists to ensure that the childonly has 21 chromosomes? This is really an issue to me - as I want mydaughter to have every opportunity to have a "normal" life and one of themost fulfilling things in my life has been being a Mommy.Darlene (Mom to , 5 and , 3)-----Original Message-----From: mommy17744 Sent: Thursday, July 25, 2002 2:32 PMTo: MosaicDS Subject: Re:"MDS" Regarding genetic testing resultsDear ,I am curious about something, did Ariel's genetesist (I'm sure this is not spelled correctly), ever tell you that if she ever had children, she would most likely have a (full) DS child? After we found out about Jakob's MDS, we went to see a genetisit? because we wanted more children and they she told us that Jakob would very likely have a DS child. Which really upset me, considering we really don't know what his future will be like. (Although, who does know what any child's future will hold?) Anyway, I'm rambling again. Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Dear , My understanding is that if your son father's a child, the chances are 50% if the mother does not have DS. Some males with MDS have a healthy sperm count and can father a child. It is thought that all males who have 100% DS are sterile. I spoke to this matter with Jonas' geneticist and she said that she had just recently done a sperm count for a 21 year old male with MDS who wanted to know if he could father a child, and it was normal. This fellow was raised with nobody but his parents and doctors knowing about the MDS. They never told the school, and he is in college now. He has a very low percentage of effected cells and has managed to have a very normal life including no medical problems at all. Barb Martz Mom to Jonas 1 1/2 (MDS) & P.S. Maybe I am being too hard on some of these docs, but I think they sometimes tell you what they think is best, not what is really the honest truth of the matter. In other words, the doc may believe it would be best for Jakob not to have children, so he gave you information that served his own agenda! Re:"MDS" Regarding genetic testing results Dear ,I am curious about something, did Ariel's genetesist (I'm sure thisis not spelled correctly), ever tell you that if she ever hadchildren, she would most likely have a (full) DS child? After wefound out about Jakob's MDS, we went to see a genetisit? because wewanted more children and they she told us that Jakob would verylikely have a DS child. Which really upset me, considering we reallydon't know what his future will be like. (Although, who does knowwhat any child's future will hold?) Anyway, I'm rambling again.Thanks in advance!! (Mom to Jakob,7)

[Guest guest]

Darlene, Talk to the geneticist about it. I am not sure that one of your eggs can be implanted in your daughter if that is what you were meaning. It may be that one could, but for some reason I am thinking that there is a problem with that. Who knows what may be available to our children? Adoption may be a great thing for them too. Any way I get to bounce that grandbaby on my knee will be OK with me! I tell my sisters that I will have to bounce their grandchildren in case I never get any of my own. A funny note: is always OVER THINKING everything, and he said, "Mom, I am so glad that when I grow up and get married, I am not the one who will have to go to the hospital and get the baby cut out of my stomach!" (He asked how he and Jonas got out of my stomach, and that was a truthful answer! 2 c-sections ) Barb Martz RE: Re:"MDS" Regarding genetic testing results -This is something I have been thinking about a lot lately. I wonder if Ishould freeze some of my eggs so that will have the chance to be amommy to a "normal" child. We don't have another daughter and she only hasone female cousin, but I am assuming it is costly and there is no chancethat one of my eggs is not what caused the mosaicism. Should I wait and seeif 20 years down the road the technology exists to ensure that the childonly has 21 chromosomes? This is really an issue to me - as I want mydaughter to have every opportunity to have a "normal" life and one of themost fulfilling things in my life has been being a Mommy.Darlene (Mom to , 5 and , 3)-----Original Message-----From: mommy17744 Sent: Thursday, July 25, 2002 2:32 PMTo: MosaicDS Subject: Re:"MDS" Regarding genetic testing resultsDear ,I am curious about something, did Ariel's genetesist (I'm sure thisis not spelled correctly), ever tell you that if she ever hadchildren, she would most likely have a (full) DS child? After wefound out about Jakob's MDS, we went to see a genetisit? because wewanted more children and they she told us that Jakob would verylikely have a DS child. Which really upset me, considering we reallydon't know what his future will be like. (Although, who does knowwhat any child's future will hold?) Anyway, I'm rambling again.Thanks in advance!! (Mom to Jakob,7)Won't you please consider adding your personal story on the MDS websitetoday? http://www.mosaicdownsyndrome.com*************************************************MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************