Re: Anne R-Future of Mito Kids/help

[Guest guest]

Hi Anne,

I can hear your heart beating as you send this message. I also read

Jean's very heartwarming post to you regarding your feelings. I

want you to know that I fully agree with what Jean has told you.

I raised 4 children and I have 14 grandchildren. Three of my four

children are diagnosed and 7 of the grandchildren. We savor every

moment we have together and take care of the medical issues as they

arise. This is not to say that we have not mourned the fact that we

have this desease but work hard to make the very best we can out of

all situations. One of the most important things for us is to try

to live life as normally as possible, not letting medical issues

take presidence.

No one - not even the best doctors - can give you the answer to the

questions you are asking. They don't have this power. They can

tell you the potentials but never the real answer. No one can tell

parents of healthy children what the future will bring them either.

Yes.. this disease is a mystery. Test results can change from one

day to another. Biopsies are normally accurate but other doctors

will question them. There is still a great deal to learn and we

have to be active in self advocating and continue with that advocacy

for as long as it takes.

Treat the symptoms as they come and enjoy your child. Being a

mother is the best profession that I know of. Cherish every moment.

I am glad I met you in the chat last night and hope you come back

again. Please try to take one day at a time and have faith that you

are doing your very best as a Mom.

Alice (justagram)

> Hi,

>

> I did ask the question to Dr. Boles last night and he said that he

sees many

> mito diseases that are not progressive and don't end up with

cognitive

> problems.

>

> I guess, though, I don't feel assured. After last night's chat, I

start

> thinking, if they aren't able to say that muscle biopsies are

definitive, and labs

> shift from normal to not normal often, then how can I feel assured

that my son

> (if he even does have mito) has one of the 'non-progressive'

forms? How can I

> be assured that he's not going to have a cognitive regression?

>

> Any ideas?

>

> Anne R