and recent thoughts

[Guest guest]

Hello All,

I don't post very often although I've been a member of this list for over

five years. I feel as if I know all of you, even though you don't hear from

me much. I've been following the grief/privacy thread and truly

appreciating the sharing. Sometimes hearing another's viewpoint can help a

person realize just what it is they are feeling. Maybe they've been unable

to sort through it or express it, but someone else has, and now they can

too. The people who choose to share their innermost emotions are helping

others find their own way there.

, this is what finally made me speak up:

> I want to be fussing at her because she is late coming home from a date,or

> she got a speeding ticket for driving to fast.I should be raising cain

> because she brought all her dirty laundry home from college for me to

> wash.Or even getting her ready for her wedding ( is 20 yrs old).

Our healthy daughter is nearly 15 and our mito son is 9 1/2. While it is a

challenge trying to guide a teenage girl, I am thankful every moment that

Annie is doing all the normal things a freshman in high school does - good

or otherwise!

Connor is in fourth grade and a bright little boy but quite physically

challenged. I did not know how close I could feel to another human being

until Connor came along. We have a connection that I know I cannot bear to

lose. We, as many of you, were told not to expect him to survive much past

4 years old. Well, he proved them wrong and he has been pretty stable

recently. His official diagnosis is Leigh's due to Complex IV deficiency.

After nearly losing him at 19 months and again at 3 years old, I awake each

day wondering if this is the day he begins to decline. But no! He's either

thinking up a new joke or worrying about a math test.

I have much admiration for each and every one of you parents and patients on

this list. You never cease to inspire me.

For the record, Connor has had two muscle biopsies. The first was frozen

(sat in the freezer for 7 months before being sent out for testing!) and

rendered the " mitochondrial proliferation " result that means nothing. His

second was fresh and done in 1996 by Dr. Haas in San Diego. Connor was

diagnosed from that muscle biopsy along with the protocol they conducted for

the research project. His diet and supplements were 'overhauled' there and

Connor continues to be followed by Dr. Naviaux in San Diego.

Connor is 47 " tall and weighs 56 lbs. He takes 1320 mg Carnitor daily and

240 mg CoQ10 (along with numerous other supplements). He does not walk, his

fine motor skills are not great, his vision is poor and he is the most

handsome guy I know!

Thank you all for being here,

mary b

Ventura, CA

(60 miles north of Los Angeles and about 40 miles north of where Lori is

moving to!)