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Topic: OT- For my children

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Subject: OT- For my children
Date Posted: 9/19/2011 11:04 AM ET
Member Since: 9/24/2007
Posts: 453
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This week is Mitochondrial Disease Awareness Week.  It doesn't come up much in my posts, but both of my children have this devastating progressive neuromuscular disease.  The amazing part is that it's not that uncommon, but almost no one has heard of it (sadly, including a lot of doctors).  If you can spare the time, visit www.umdf.org and learn about mito.  We all have mitochondria in our cells, but people with mito have malfunctioning ones, which leads to not enough energy, fatigue, and muscle and organ system damage.  There is no cure, there is no proven treatment.  If any of you are willing to be one more person in the world who knows about mito I would greatly appreciate it. 

Hmmm....anyone wonder why I like to lose myself in a good romance ? :)

Date Posted: 9/19/2011 1:25 PM ET
Member Since: 3/14/2008
Posts: 1,770
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{{{Hugs}}} to you Sara.  I know someone (also a Sarah!) who has this in her family, too.  Her youngest, sadly, passed away from complications due to mito this year, and they just found out another of their children has it, too.  So sad that there is no cure yet. 

Date Posted: 9/19/2011 1:38 PM ET
Member Since: 9/24/2007
Posts: 453
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Thanks Michelle- it is so common since it is a genetic disease for more than one child to be affected, and often a parent too (me in our case).  This just complicates everything.

Oprah had a good friend named Mattie Stepanek who was a young man in a wheelchair who wrote the beautiful "Heartsongs" books.  He passed from mito as well as all of his siblings.  I would guess I would say he is the most "well known" mito person I know.

I am grateful that my darling daughter just had her 16th birthday, but heartbroken that she is mostly homebound nowdays, can't attend school or hang out with friends like a normal teen.  So unfair.  And my sweetie Kevin is 14 1/2 and we are dreading how puberty will affect him.  The brain growth in puberty takes vast amounts of energy and tends to cause new problems.  This is what happened with Julie.  Prior to that she had gi problems but now she has a g-tube.

Date Posted: 9/19/2011 2:52 PM ET
Member Since: 5/3/2006
Posts: 6,436
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Thanks for raising awareness, Sara. I certainly knew almost nothing about this. How hard to have two children with such a devastating condition, when you must be so tired yourself.

(My son's autism has a lot to do with my love of romance, too. Gotta get those happy endings.)

Date Posted: 9/19/2011 9:04 PM ET
Member Since: 9/24/2007
Posts: 453
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Thanks Willa- my kiddos have autism too- that was their original dx years ago (one Aspie, one autism) so I certainly know how a good romance can take you away!

Date Posted: 9/20/2011 3:10 AM ET
Member Since: 5/13/2006
Posts: 2,157
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Hi Sara!  I love that you are raising awareness.  My youngest died of complications relating to her severe disabilities.  I think that mito may have played a role, but at the time it was never raised as an issue.  My oldest lives with multiple disabilities (Fragile X Syndrome/autism, stroke and Turner's syndrome) which severely impact her life.  She just turned 18 and we are in the middle of guardianship, SSI and transition to adult services.  I used to read a lot of mysteries, but like you guys decided that the HEA was a much better fit for my mental health. :)

Date Posted: 9/20/2011 8:51 AM ET
Member Since: 9/24/2007
Posts: 453
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Hugs Theresa, I admit that I'm not looking forward to all the hoops we are approaching as we near that transition to adulthood.  I wish all the best for your child, and your youngest who earned her wings.  You may be right about mito- it so often is not considered, though it should be anytime there are problems in 3 or more organ systems without any unifying explaination.  But until recently, it almost never was on anyone's radar.  Still isn't for most docs.

Date Posted: 9/20/2011 10:40 AM ET
Member Since: 2/24/2006
Posts: 5,498
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(My son's autism has a lot to do with my love of romance, too. Gotta get those happy endings.)

As does mine.  Sara you are in my prayers.  I know what it's like to raise a differently abled child.  My son with autism is now 19 and approaching adulthood and the great unknown.  I also have a nephew with learning disabilities that will affect his future and a neice with severe psoriasis which affects not only her skin but her confidence.      

Hugs to everyone.

Date Posted: 9/21/2011 2:12 PM ET
Member Since: 6/19/2008
Posts: 5,710
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Sara ,

I too was born with a disability which has caused me to have my RT. leg amputated..  But , I feel very greatfull that my kids never had it. I can only imagain what you must be going through.

Hugs....

sending thoughts & prayers to you and your family.



Last Edited on: 9/22/11 6:53 PM ET - Total times edited: 1