Bill C

[Guest guest]

i agree you should talk about what our mito kids go through.. some are horriable i also had a little girl with leighs she passes away pretty quick.. she was six months eight days when she passed in 2003.. of may .. i miss her so much and i talk to her and god every day .. it is hard to deal with and hard to watch our kids go through suck a terriable disease.. i pray all the time for the kids and babys that are going through this .. but the most sad thing is that alot of people in my state dont really know much about this disease i wish it was talked about more.. when i first found out it was on january the 1st at 12am exitily sorry cant spell.lol... but any way i thought i would only see somthing like tht on tv.. but no it does happen i still go through alot even though its getting close to about three years now but i dont think i will ever be right or at peace .. i miss her badly i just had another child two monthes ago they told me he is perfect.. but hey what is perfect you know .. any way her is my daughters new web site if you would like to see her .. god bless you all... i keep you in my thought day and night love shannon Nov, 7th 2002 - May 15th 2003

[Guest guest]

Bill,

Thank you for your story. Many people don't want to revisit the days

that they were told such horrible news. Thank you so much for

sharing. It was wonderful to read how well your little man is doing.

Yes! God is good. I pray with Eli every night. I give him to God

Before I leave his room with the understanding that if Elijah is

Breathing in the morning I am blessed with yet another day. He also

listens to praise music at night. Actually! Funny that I write that

now because " our God is an Awesome God " is playing just one room

away. I don't think you are crazy by what you share. It is your

family's experience. As I have heard a million times " each Child is

different " . I am overjoyed that your son has been able to accomplish

what he has. There are many unknowns about Leigh's I have seen that

most go quickly and then there are Suhad's Girls, your Logan and

many more that have been beating the odds. I know that Suhads Girls

have both passed from this horrible illness. These children have

touched so many people in such a short time no matter their age.

I do a lot with my Eli, the meds, stimulation, massage, walking or I

should say strollering, swimming and he is still that of a newborn

(Blind and less responsive). I am never very far away. I love him

with so much of my soul. I can't remember but I think the longest I

have ever been apart from my precious little guy was 4 hours. He is

a huge 48 lbs now. Other than the damage in his brain he is a

beautiful little angel. Everyone always says how perfect and

peaceful he is. Peaceful because he could put anyone to sleep once

they hold him. Maybe it is his 48 lbs that holds them down. No! I do

believe that God made him that way for a reason. I have even been

told by people that have held him that they feel closer to God when

they are around him. I would think them crazy but I do too. I am so

pleased that I was chosen as his mother.

God Bless you

Eli's Angels-Is a non-profit we have started

http://home.comcast.net/~elis_angels/

Ann (Elijah)Leigh's 2years old

[Guest guest]

We will keep praying for you. Keep the memories alive. Both the good and bad. You can make it and hopefully one day, we all will be able to say that we don't have any sick kids.addwillbebad@... wrote:

i agree you should talk about what our mito kids go through.. some are horriable i also had a little girl with leighs she passes away pretty quick.. she was six months eight days when she passed in 2003.. of may .. i miss her so much and i talk to her and god every day .. it is hard to deal with and hard to watch our kids go through suck a terriable disease.. i pray all the time for the kids and babys that are going through this .. but the most sad thing is that alot of people in my state dont really know much about this disease i wish it was talked about more.. when i first found out it was on january the 1st at 12am exitily sorry cant spell.lol... but any way i thought i would only see somthing like tht on tv.. but no it does happen i still go through alot even though its getting close to about

three years now but i dont think i will ever be right or at peace .. i miss her badly i just had another child two monthes ago they told me he is perfect.. but hey what is perfect you know .. any way her is my daughters new web site if you would like to see her .. god bless you all... i keep you in my thought day and night love shannon Nov, 7th 2002 - May 15th 2003 Please contact mito-owner with any problems or questions. __________________________________________________

[Guest guest]

Ann,

Thanks for the kind words. Keep working with Eli. Keep talking to him. One day when God lets him find his voice, it will be the most beautiful sound in the world. I will put Eli on our prayer list. The more the better. Yes, each child is different, but at the same time they are the same. By this I mean,they are the most loving, caring, sincere people on the planet. And it rubs off on the older ones in the family too. My other 2 kids, now have a more compassionate love for all of man kind. God Bless You and we are here with you.

Billakurtz1974 wrote:

Bill,Thank you for your story. Many people don't want to revisit the days that they were told such horrible news. Thank you so much for sharing. It was wonderful to read how well your little man is doing. Yes! God is good. I pray with Eli every night. I give him to God Before I leave his room with the understanding that if Elijah is Breathing in the morning I am blessed with yet another day. He also listens to praise music at night. Actually! Funny that I write that now because "our God is an Awesome God" is playing just one room away. I don't think you are crazy by what you share. It is your family's experience. As I have heard a million times "each Child is different". I am overjoyed that your son has been able to accomplish what he has. There are many unknowns about Leigh's I have seen that most go quickly and then

there are Suhad's Girls, your Logan and many more that have been beating the odds. I know that Suhads Girls have both passed from this horrible illness. These children have touched so many people in such a short time no matter their age.I do a lot with my Eli, the meds, stimulation, massage, walking or I should say strollering, swimming and he is still that of a newborn(Blind and less responsive). I am never very far away. I love him with so much of my soul. I can't remember but I think the longest I have ever been apart from my precious little guy was 4 hours. He is a huge 48 lbs now. Other than the damage in his brain he is a beautiful little angel. Everyone always says how perfect and peaceful he is. Peaceful because he could put anyone to sleep once they hold him. Maybe it is his 48 lbs that holds them down. No! I do believe that God made him that way for a reason. I have even been told by people that have held him that

they feel closer to God when they are around him. I would think them crazy but I do too. I am so pleased that I was chosen as his mother. God Bless you Eli's Angels-Is a non-profit we have started http://home.comcast.net/~elis_angels/Ann (Elijah)Leigh's 2years oldPlease contact mito-owner with any problems or questions. __________________________________________________