Re: Second pregnancy-Struggling with moral issues.

March 4, 2004

DEAR ERIN MY NAME IS SHANNON AND I ALSO HAD A LITTLE GIRL WITH LEIGHS DIS.... IS YOUR CHILD STILL LIVING? I LOST BRANDY IN MAY OF LAST YEAR SHE WAS SIX MONTHES OLD... http://brandymichelle.cjb.net/ THIS IS HER WEBSITE ... IF YOU WOULD LIKE TO SEE HER .. I AM SO SORRY YOU ARE HAVING THIS PROBLEM I AM TRYING TO HAVE ANOTHER CHILD MY SELF BUT I AM NOT TRYING WITH THE SAME FATHER .. I KNOW YOU ARE SCARED I AM TO BUT WE HAVE TO PUT IT IN GODS HANDS .. IN YOUR CASE YES IT IS VERY POSSIABLE THAT THIS CHILD WILL HAVE A MITO DIS.. BUT YOU SHOULD NOT ABORT IT GOD SAYS ALL PEOPLE DESEVE A CHANCE YOU REALLY NEED TO THINK ABOUT HE BLESSED YOU WITH THIS CHILD SO YOU REALLY NEED TO TRY TO GO THROUGH WITH IT .... CAUSE IF YOU THINK ABOUT IT YOU WOULD BE KILLING THIS CHILD AND I KNOW IT IS HARD TO WATCH THEM SUFFER I HAVE BEEN THERE AND DONE THAT AND I STILL LIVE WITH IT EVERY DAY AND YOU WILL BUT AT LEAST YOU KNOW THAT YOU TRIED AND THAT IS WHAT YOU NEED TO DO ... PLEASE THINK ABOUT THIS BEFORE YOU DO IT.. IF YOU NEED TO TALK I AM ON HERE ALL THE TIME I DONT REALLY ANSWER PEOPLE NO MORE BUT I WILL ANSWER YOU SO PLEASE KEEP TALKING ... YOUR FRIEND SHANNON

March 4, 2004

DEAR ERIN MY NAME IS SHANNON AND I ALSO HAD A LITTLE GIRL WITH LEIGHS DIS.... IS YOUR CHILD STILL LIVING? I LOST BRANDY IN MAY OF LAST YEAR SHE WAS SIX MONTHES OLD... http://brandymichelle.cjb.net/ THIS IS HER WEBSITE ... IF YOU WOULD LIKE TO SEE HER .. I AM SO SORRY YOU ARE HAVING THIS PROBLEM I AM TRYING TO HAVE ANOTHER CHILD MY SELF BUT I AM NOT TRYING WITH THE SAME FATHER .. I KNOW YOU ARE SCARED I AM TO BUT WE HAVE TO PUT IT IN GODS HANDS .. IN YOUR CASE YES IT IS VERY POSSIABLE THAT THIS CHILD WILL HAVE A MITO DIS.. BUT YOU SHOULD NOT ABORT IT GOD SAYS ALL PEOPLE DESEVE A CHANCE YOU REALLY NEED TO THINK ABOUT HE BLESSED YOU WITH THIS CHILD SO YOU REALLY NEED TO TRY TO GO THROUGH WITH IT .... CAUSE IF YOU THINK ABOUT IT YOU WOULD BE KILLING THIS CHILD AND I KNOW IT IS HARD TO WATCH THEM SUFFER I HAVE BEEN THERE AND DONE THAT AND I STILL LIVE WITH IT EVERY DAY AND YOU WILL BUT AT LEAST YOU KNOW THAT YOU TRIED AND THAT IS WHAT YOU NEED TO DO ... PLEASE THINK ABOUT THIS BEFORE YOU DO IT.. IF YOU NEED TO TALK I AM ON HERE ALL THE TIME I DONT REALLY ANSWER PEOPLE NO MORE BUT I WILL ANSWER YOU SO PLEASE KEEP TALKING ... YOUR FRIEND SHANNON

March 4, 2004

DEAR ERIN MY NAME IS SHANNON AND I ALSO HAD A LITTLE GIRL WITH LEIGHS DIS.... IS YOUR CHILD STILL LIVING? I LOST BRANDY IN MAY OF LAST YEAR SHE WAS SIX MONTHES OLD... http://brandymichelle.cjb.net/ THIS IS HER WEBSITE ... IF YOU WOULD LIKE TO SEE HER .. I AM SO SORRY YOU ARE HAVING THIS PROBLEM I AM TRYING TO HAVE ANOTHER CHILD MY SELF BUT I AM NOT TRYING WITH THE SAME FATHER .. I KNOW YOU ARE SCARED I AM TO BUT WE HAVE TO PUT IT IN GODS HANDS .. IN YOUR CASE YES IT IS VERY POSSIABLE THAT THIS CHILD WILL HAVE A MITO DIS.. BUT YOU SHOULD NOT ABORT IT GOD SAYS ALL PEOPLE DESEVE A CHANCE YOU REALLY NEED TO THINK ABOUT HE BLESSED YOU WITH THIS CHILD SO YOU REALLY NEED TO TRY TO GO THROUGH WITH IT .... CAUSE IF YOU THINK ABOUT IT YOU WOULD BE KILLING THIS CHILD AND I KNOW IT IS HARD TO WATCH THEM SUFFER I HAVE BEEN THERE AND DONE THAT AND I STILL LIVE WITH IT EVERY DAY AND YOU WILL BUT AT LEAST YOU KNOW THAT YOU TRIED AND THAT IS WHAT YOU NEED TO DO ... PLEASE THINK ABOUT THIS BEFORE YOU DO IT.. IF YOU NEED TO TALK I AM ON HERE ALL THE TIME I DONT REALLY ANSWER PEOPLE NO MORE BUT I WILL ANSWER YOU SO PLEASE KEEP TALKING ... YOUR FRIEND SHANNON

March 4, 2004

My family has gone through similar issues. Our daughter, Grace, has mito. Her type is non specific so we do not have a clear outlook for the rest of her life. In her case, though, it is becoming clearer that she is not fatal. She will always have medical problems and take a lot of medicine, this is certain, but as far as anything else the sky is the limit.

Since Gracies diagnosis we did consider another child. She is our fourth child, so we already had a large family. But we both love children. I knew the odds, 1/4 to be affected again. We do not know the odds of how serious the child could be if affected, though. I looked at it in a positive, we have a 75% shot at the baby being perfectly healthy. We ultimately decided to put it into larger hands. We elected to not use medical birth control, but used natural family planning. We figured if it happens, it is ment to be. Well, to keep this as short as possible, I am due in Sept. with our fifth baby. We know the risks, and will have the baby tested as soon as he/she is born. I am confident the baby will be fine, but if not I will love him/her the same. I also live with a saying that is very near to my heart. "That that cannot kill you, can only make you stronger." I have become very strong since Grace. I truly believe God will not give us another sick child, unless he thinks our family can handle it. My best advise is to use your faith and your mind as a tool. Only you and the father can decide what is best for your family. I wish you all the best.

March 4, 2004

My family has gone through similar issues. Our daughter, Grace, has mito. Her type is non specific so we do not have a clear outlook for the rest of her life. In her case, though, it is becoming clearer that she is not fatal. She will always have medical problems and take a lot of medicine, this is certain, but as far as anything else the sky is the limit.

Since Gracies diagnosis we did consider another child. She is our fourth child, so we already had a large family. But we both love children. I knew the odds, 1/4 to be affected again. We do not know the odds of how serious the child could be if affected, though. I looked at it in a positive, we have a 75% shot at the baby being perfectly healthy. We ultimately decided to put it into larger hands. We elected to not use medical birth control, but used natural family planning. We figured if it happens, it is ment to be. Well, to keep this as short as possible, I am due in Sept. with our fifth baby. We know the risks, and will have the baby tested as soon as he/she is born. I am confident the baby will be fine, but if not I will love him/her the same. I also live with a saying that is very near to my heart. "That that cannot kill you, can only make you stronger." I have become very strong since Grace. I truly believe God will not give us another sick child, unless he thinks our family can handle it. My best advise is to use your faith and your mind as a tool. Only you and the father can decide what is best for your family. I wish you all the best.

March 4, 2004

My family has gone through similar issues. Our daughter, Grace, has mito. Her type is non specific so we do not have a clear outlook for the rest of her life. In her case, though, it is becoming clearer that she is not fatal. She will always have medical problems and take a lot of medicine, this is certain, but as far as anything else the sky is the limit.

Since Gracies diagnosis we did consider another child. She is our fourth child, so we already had a large family. But we both love children. I knew the odds, 1/4 to be affected again. We do not know the odds of how serious the child could be if affected, though. I looked at it in a positive, we have a 75% shot at the baby being perfectly healthy. We ultimately decided to put it into larger hands. We elected to not use medical birth control, but used natural family planning. We figured if it happens, it is ment to be. Well, to keep this as short as possible, I am due in Sept. with our fifth baby. We know the risks, and will have the baby tested as soon as he/she is born. I am confident the baby will be fine, but if not I will love him/her the same. I also live with a saying that is very near to my heart. "That that cannot kill you, can only make you stronger." I have become very strong since Grace. I truly believe God will not give us another sick child, unless he thinks our family can handle it. My best advise is to use your faith and your mind as a tool. Only you and the father can decide what is best for your family. I wish you all the best.

March 4, 2004

Dear ,

M y Name is , I don't post often, but I am always here reading,

thinking and praying for all of you.

My daughter Aspyn passed away July 15, 2002, she was 8 months and 1 day old.

My husband and I always wanted to be parents, and I think we were pretty

good parents to. We had a beautiful little girl who changed our lives

forever. We miss her so much!! After Aspyn passed away we knew our chances

of having another baby being affected by this awful disease, we decided to

wait and we would consider adopting.

In January of last year I had a dream, and Aspyn was in it. She told me

that it would be okay to have another baby, and that everything would be

just fine. I woke up and didn't know what to think. I went in for my

yearly and told the doctor we were considering trying again, but I didn't

think it would be easy since my cycle had been so screwed up (depression,

endometriosis) the doctor asked if she could give me some medicine to

regulate me and then start me on fertility meds (Aspyn was conceived on

fertility med) I told her no that if this was going to happen, it was going

to happen on its own, no medicine. The next day I got my period which I

hadn't had since before Aspyn was conceived. We decided to start trying,

the next month came and I didnt get it, so I went to the doctor and had a

pregnancy test, it came back negative, I waited another week and again it

came back negative. I started having pain in my lower right side and went

back to the doctor, they figured my endometriosis was back and told us

either I go on fertility meds or I have a laporoscopy. So they gave me some

medicine that was going to force my period, and I needed to tell them by the

end of that week what our decision was. I dropped the prescription off at

the pharmacy, and went to visit Aspyn at the cemetery. I sat on her bench

and cried, I didn't know what to do, I didn't want to have to make such a

big decision, we wanted God to make the decision for us. As I was sitting

there I got a call to go show a house, so we went and looked at least 10

houses, after that I was on my way to the pharmacy to pick up my

prescription when I got a call that the people I showed houses to wanted to

make an offer, so I turned around and headed back. As I was driving I

looked up at Aspyn (her picture is on my visor) and asked her what she

thought we should do, just then on the radio the song " I Can only Imagine "

came on (we played this song at Aspyn's funeral) and our family picture fell

off the visor and landed on my lap. I knew what she was saying :-) By the

time I got home the pharmacy was closed and I never got it picked up. The

next day I got a call from the clinic, they asked me if I had taken the

medicine yet, I told them no, and they said thank goodness, because your HCG

levels came back and you are pregnant!!

November 24, 2003 Gentry Hope was born 2 years and 10 days after the day her

big sister Aspyn was born. Gentry is growing wonderful, she now weighs more

than Aspyn ever did, and so far all of her blood work has come back normal.

We have been blessed twice with a wonderful miracle, we pray that this

little miracle will stay with us much longer than our first miracle did.

I guess what my long story is trying to say is, we left it up to God, we

prayed so often, and asked others to pray for us. Not all Mito stories end

the same, we finally got a happy ending. The decision you make is up to

you, if you decide to have the baby you will be paranoid every waking

minute, but the end result (no matter if the baby is healthy or not) you

will still have your one creation, a baby to love, and hold. Sometimes God

does work in mysterious ways. I always believed in God, but after my life

changed so much I went from questioning God " why? " and now, I just believe

he has a plan, and no matter what I do, He really still does have the upper

hand.

No matter what you decide, we will all stand by you, I know it is not an

easy one. I will keep you in my prayers. If you ever need to talk please

feel free to e-mail me.

Thoughts and Prayers,

Wayne and Block

Mommy and Daddy of

~Gentry Hope~ Healthy &

~Aspyn Remar~ Unknown Mitochondrial Disease, Lactic Acidosis, and

Cardiomyopothy

November 14, 2001 to July 15, 2002

Please visit Aspyn at www.aspynblock.com or

http://www.amandabowden.pwp.blueyonder.co.uk/aspyn.htm

Second pregnancy-Struggling with moral issues.

> Hi, I'm . My 18month old son, Tarok has been recently diagnosed

> with Leigh's disease. After strugglung with moral issues around this

> genetic disorder I decided to take precautions against having any

> more children and look into adoption in the future. On one of my hard

> to come by nights away from the hospital with his father, we got very

> drunk and I'll leave the rest to imagination. I went to see the

> doctor a couple days later (supposed to be within 72 hours) for a

> morning after pill and future birth control prescriptions. He said

> that I would get a period from the pill and I didn't. Maybe I took it

> too late, maybe I didn't conceive to begin with, I have a few more

> days at least before I can find out(I should be due for a period next

> week). Tarok's father (we are not in a monogamous relationship) is

> very supportive, but does not beleive he could handle having an other

> sick child. I do not want to bring a child into the world just to

> suffer, yet I do not regret having Tarok for a second, and beleive

> that he enjoys life thouroughly even when he is having a hard time.

> Tarok has done so much to change the lives of those around him for

> the better. Because of him, I got off the street and into school, I

> have gained in self confidence, I have enjoyed such sacred

> experiences as pregnancy, breastfeeding, and just holding and adoring

> my son. I have quit smoking, and so have his father and grandmother.

> Because of Tarok's illness a long standing feud in my family has been

> deminished, and my mother has been reunited with her sisters. Am I

> just being selfish by wanting to have an other child of my own? Of

> course I'm afraid of becoming single again after being a mother. I

> can't imagine what it would be like. But I also have to beleive that

> this child has a chance at a long, relatively normal life. I have

> CFS, probably due to mito, but I would never go back and just not be

> born, so how can I make this decision for an infant? Please tell me

> if you've struggled with similar issues. I know I'm not the only one

> who's considered it. I guess I just need to know I'm not alone.

> Tarok's father doesn't even seem conflicted about it. I've always

> been pro-choice, but never considered that my choice might someday be

> abortion. I just don't know if I could go through with it.

>

> Donovan (21, nursing student and single mother of Tarok)

>

> Please contact mito-owner with any problems or questions.

>

March 4, 2004