Happy 9th B-day Ben! (Cindy)

[Guest guest]

Happy birthday Ben! Lots of birthdays lately on here. Always wonderful

to hear another child is celebrating another year!

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

RE: venting....trust me..VERY LONG

> Dear Donna:

>

> You are not alone! We have two boys (Ben - 9 (today!) and Seth 13). They

> both have mito and I'll bet that I do, too. I have never been questioned

> or

> doubted (at least to my face) about their problems or diagnosis. For that

> I

> am grateful. However, for a long time doctors told us that Seth's

> problems

> were all unrelated. This was until 1997 when he lost muscle strength,

> too.

> That combined with his cognitive problems, seizures and other

> miscellaneous

> problems brought the doc to wonder about mito. Ben was a baby when Seth

> was

> diagnosed. As small problems began to arise with Ben, no they can't be

> related to Seth's problems. Well, when he started seizures, no one would

> deny it any longer. It's devastating to feel that you've passed it on and

> devastating to feel that mito has infected these beautiful kids we love.

> It

> is only magnified by the love you have for 5! I am sorry you have to deal

> with this. Please know you are not alone.

>

> Cindy

> * I just need to know I am not alone.... Donna.

>