Suhad

[Guest guest]

I too am glad you chose to stay. Your imput means tons to us and we hope we

too can give you some sense of comfort in this hard time. I have been

amazed at your strength and I know my sister-in-law really enjoyed visiting

you and hearing about your girls. I forwarded the Eulogy to her so she

could read it and know it will truly touch her heart. Please feel free to

let her and/or I if there is anything we can do for you, even if it is just

another nice visit to share your girls' lives with Eileen again. I am sure

it helps to share their stories, memories, and photos with others.

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

photo look into Mito)

Darla: mommy to

Asenath (5) Possible 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 (18 months) Possible 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 (16) migraines, sensory issues, & some evidence of SLE's...

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

Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum,

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

left hemiplegia (arm)...

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

Juest Venting Today

>

>

>

> Hi everyone, I just need to vent today with some families that know

> and understand what my family is going through. It has been a couple

> months since I posted anything but I have been avoiding all contact

> with family and friends as they all just don't seem to understand or

> they tippy-toe around us.

>

> I have two beautiful daughters, (11) and my Kay (14). For

> some odd reason or fate, Kayla was diagnosed with this Mitochondrial

> disorder, Complex I and IV, in January 2004. Kay was able to walk up

> until September 2004 and now relies on a wheelchair to get around;

> she can still walk a bit but with assistance. I encourage her

> everyday to continue to walk...walk through the pain/weakness in her

> little legs. I am the primary person in Kay's life, especially when

> it comes to appointments and supporting her and I have been dealing

> with this on my own but I am at the end of my rope with doctors and

> appointments and not getting anywhere.

>

> I sympathize with the families out there who have lost a child to

> this disease and I thank god everyday that Kay has not reached that

> point. Still, it is hard to sit by and watch your own child struggle

> with the everyday stress she must go through; knowing she just cannot

> get up and walk again (right now); how she has to watch her friends

> and family meander around her while she sits. I have to admit though

> that I have raised an amazing daughter as through all this, she can

> still keep a smile on her beautiful little face, she has a great

> sense of humour, I love to watch her couch dance and sometimes I hold

> her 5'2 " body in my arms and dance with her. She gives me such

> strength!!!!!!!!

>

> I know doctor's cannot save the world, but why do they have to take

> their sweet time finding out exactly what is wrong with our

> children. I think that causes more stress on them than the actual

> disease/disorder itself. Our dilemma in the last few months has been

> Kay's hemoglobin level keeps dropping and has had two transfusions in

> three months and they can't figure out why.

>

> We live in the beautiful Fraser Valley in British Columbia, I have

> left my job to look after Kay and now due to the costs of living we

> have to move north to where it is more affordable to live with one

> income.

>

> Well, I am just rambling and venting. Just some words of support or

> encouragement are what I need at this time as I am here with Kay

> packing for our move; my husband and other daughter have already

> moved.

>

> Anyhow, you all have a great day and I hope and pray this gets easier

> for us.

>

> Hugs )

>

>

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>

> Please contact mito-owner with any problems or

> questions.

>