My mito kid goes to the ROTC Ball!

[Guest guest]

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito ( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

[Guest guest]

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito ( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

[Guest guest]

Cindy:

Watch out, he is one good looking guy. See even with mito we can do things.

And a commanding officer, neat.

Nerenhausen

mom to Leah

Cj wrote:

Hi Y'all- had to share- this

is my oldest son ( almost 17) who has mito ( all 4 of my boys have atypical

partial complex 1).

He is Commanding Officer of his

platoon- we are very proud Cindy-GA

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm

[Guest guest]

Cindy:

Watch out, he is one good looking guy. See even with mito we can do things.

And a commanding officer, neat.

Nerenhausen

mom to Leah

Cj wrote:

Hi Y'all- had to share- this

is my oldest son ( almost 17) who has mito ( all 4 of my boys have atypical

partial complex 1).

He is Commanding Officer of his

platoon- we are very proud Cindy-GA

Please contact mito-owner with any problems or questions.

This message scanned for

viruses by CoreComm

[Guest guest]

Yes, he is cute- beat up face from wrestling and all- his one eye is still swollen- but handsome all the same.

Just FYI- he has a horrible tremor in both arms & hands- and still won the marksmanship award at boot camp. Many things can be done if you work hard enough

Have a good weekend, Cindy-GA

Re: My mito kid goes to the ROTC Ball!

Cindy:Watch out, he is one good looking guy. See even with mito we can do things. And a commanding officer, neat.

[Guest guest]

Yes, he is cute- beat up face from wrestling and all- his one eye is still swollen- but handsome all the same.

Just FYI- he has a horrible tremor in both arms & hands- and still won the marksmanship award at boot camp. Many things can be done if you work hard enough

Have a good weekend, Cindy-GA

Re: My mito kid goes to the ROTC Ball!

Cindy:Watch out, he is one good looking guy. See even with mito we can do things. And a commanding officer, neat.

[Guest guest]

Boy, he is

good looking! Thanks for

sharing! Thanks everyone for sharing the pics. I love to

see them.

Cindy (Washington J)

[Guest guest]

Cindy,

What a handsome young man. You must be very proud.

Kathy, grandma to Audrey, 3 yearsCj wrote:

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito ( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

Please contact mito-owner with any problems or questions.

[Guest guest]

Boy, he is

good looking! Thanks for

sharing! Thanks everyone for sharing the pics. I love to

see them.

Cindy (Washington J)

[Guest guest]

Cindy,

What a handsome young man. You must be very proud.

Kathy, grandma to Audrey, 3 yearsCj wrote:

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito ( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

Please contact mito-owner with any problems or questions.

[Guest guest]

A very handsome young man. My son Luke is almost 17 too. Thanks for

sharing the photo.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

My mito kid goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito (

all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

[Guest guest]

A very handsome young man. My son Luke is almost 17 too. Thanks for

sharing the photo.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

My mito kid goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito (

all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

[Guest guest]

What a beautiful picture. Thanks for

sharing. What a handsome young man.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Cj

Sent: Friday, December 03, 2004

5:41 PM

To: Mito

Subject:

My mito kid

goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest

son ( almost 17) who has mito

( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon-

we are very proud Cindy-GA

Please

contact mito-owner with any problems or questions.

[Guest guest]

What a beautiful picture. Thanks for

sharing. What a handsome young man.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Cj

Sent: Friday, December 03, 2004

5:41 PM

To: Mito

Subject:

My mito kid

goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest

son ( almost 17) who has mito

( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon-

we are very proud Cindy-GA

Please

contact mito-owner with any problems or questions.

[Guest guest]

What a beautiful picture. Thanks for

sharing. What a handsome young man.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Cj

Sent: Friday, December 03, 2004

5:41 PM

To: Mito

Subject:

My mito kid

goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest

son ( almost 17) who has mito

( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon-

we are very proud Cindy-GA

Please

contact mito-owner with any problems or questions.

[Guest guest]

What a beautiful picture. Thanks for

sharing. What a handsome young man.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Cj

Sent: Friday, December 03, 2004

5:41 PM

To: Mito

Subject:

My mito kid

goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest

son ( almost 17) who has mito

( all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon-

we are very proud Cindy-GA

Please

contact mito-owner with any problems or questions.

[Guest guest]

I was wondering if you could share more about your son's symptoms since

he " looks " great and it appears he must be doing well in some areas to be

able to excel in his platoon. My son Luke, also 16, excels in different

areas and yet has really been struggling in other areas. I would love to

hear more about him to see how much in common they are.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

My mito kid goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito (

all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

[Guest guest]

I was wondering if you could share more about your son's symptoms since

he " looks " great and it appears he must be doing well in some areas to be

able to excel in his platoon. My son Luke, also 16, excels in different

areas and yet has really been struggling in other areas. I would love to

hear more about him to see how much in common they are.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

My mito kid goes to the ROTC Ball!

Hi Y'all- had to share- this is my oldest son ( almost 17) who has mito (

all 4 of my boys have atypical partial complex 1).

He is Commanding Officer of his platoon- we are very proud Cindy-GA

[Guest guest]

Sure- I would be happy to.

Both arms and hands tremor, with the right being a bit worse- the tremor has a consistent

rhythm- according to the Neuro. The tremor started at the beginning of puberty. He cannot control

the tremor. It does not get worse with caffeine or sugar consumption. He takes no meds for it- as he chooses

not to. He was very small and thin until he started puberty plus lifting weights.

If his blood sugar drops too low - for him ( he bottoms out at a higher number than the average population)

or his lactic acid gets too high, he has periods of absence- (which they have said are not true absence seizures, as they can be controlled). I and he can tell when it is getting up there- he starts acting mentally hyper, and he gets really sore.

He has hypermobile joints, and his shoulders are double jointed.

I think he looks so good due to his diet ( low carb, no artificials, plenty of fruit, meat and nuts), the cocktail, and pacing .

Dairy is out- causes more problems than benefits. Too hard for his body to process-he ends up a mucus factory. I think it takes

too much energy for his body to try & digest it.

He requires more sleep than most teens get. He paces himself at wrestling practice- if he goes "full tilt" one day- he really pays for it the next few days.

He is in phenomenal physical shape- which I believe helps him stave off many viruses, etc.

Cindy

Re: My mito kid goes to the ROTC Ball!

I was wondering if you could share more about your son's symptoms since he "looks" great and it appears he must be doing well in some areas to be able to excel in his platoon. My son Luke, also 16, excels in different areas and yet has really been struggling in other areas. I would love to hear more about him to see how much in common they are.

[Guest guest]

Sure- I would be happy to.

Both arms and hands tremor, with the right being a bit worse- the tremor has a consistent

rhythm- according to the Neuro. The tremor started at the beginning of puberty. He cannot control

the tremor. It does not get worse with caffeine or sugar consumption. He takes no meds for it- as he chooses

not to. He was very small and thin until he started puberty plus lifting weights.

If his blood sugar drops too low - for him ( he bottoms out at a higher number than the average population)

or his lactic acid gets too high, he has periods of absence- (which they have said are not true absence seizures, as they can be controlled). I and he can tell when it is getting up there- he starts acting mentally hyper, and he gets really sore.

He has hypermobile joints, and his shoulders are double jointed.

I think he looks so good due to his diet ( low carb, no artificials, plenty of fruit, meat and nuts), the cocktail, and pacing .

Dairy is out- causes more problems than benefits. Too hard for his body to process-he ends up a mucus factory. I think it takes

too much energy for his body to try & digest it.

He requires more sleep than most teens get. He paces himself at wrestling practice- if he goes "full tilt" one day- he really pays for it the next few days.

He is in phenomenal physical shape- which I believe helps him stave off many viruses, etc.

Cindy

Re: My mito kid goes to the ROTC Ball!

I was wondering if you could share more about your son's symptoms since he "looks" great and it appears he must be doing well in some areas to be able to excel in his platoon. My son Luke, also 16, excels in different areas and yet has really been struggling in other areas. I would love to hear more about him to see how much in common they are.

[Guest guest]

I forgot to mention that Luke deals with the muscle pain too. He says it

has been getting worse. He says everything seems to hurt more lately. For

many years he couldn't feel any temperature or pain in his body. Then this

past summer his sensory issues came back and now have gone to the opposite

side where he feels everything too much. That is part of why he is losing

weight. He hates to touch so many types of food, so he doesn't eat. And he

says that just bumping something really hurts lately. He said the other day

he almost wished he could go back to not feeling things again because he was

so sore.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: My mito kid goes to the ROTC Ball!

I was wondering if you could share more about your son's symptoms

since

he " looks " great and it appears he must be doing well in some areas to be

able to excel in his platoon. My son Luke, also 16, excels in different

areas and yet has really been struggling in other areas. I would love to

hear more about him to see how much in common they are.

[Guest guest]

I forgot to mention that Luke deals with the muscle pain too. He says it

has been getting worse. He says everything seems to hurt more lately. For

many years he couldn't feel any temperature or pain in his body. Then this

past summer his sensory issues came back and now have gone to the opposite

side where he feels everything too much. That is part of why he is losing

weight. He hates to touch so many types of food, so he doesn't eat. And he

says that just bumping something really hurts lately. He said the other day

he almost wished he could go back to not feeling things again because he was

so sore.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: My mito kid goes to the ROTC Ball!

I was wondering if you could share more about your son's symptoms

since

he " looks " great and it appears he must be doing well in some areas to be

able to excel in his platoon. My son Luke, also 16, excels in different

areas and yet has really been struggling in other areas. I would love to

hear more about him to see how much in common they are.