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Re:Has The same Mito Complex affected your other children....

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  • Howard & Brenda Savage
    Our oldest son Adrian (14yrs this month) has complex IV mito - was severely affected from birth & was 14 months old before we had a diagnoses. He has a VERY
    Message 1 of 4 , Sep 1, 2009
      Our oldest son Adrian (14yrs this month) has complex IV mito - was severely affected from birth & was 14 months old before we had a diagnoses.
       
      He has a VERY HEALTHY younger brother.  We were informed that we had a 1 in 4 chance of any future children having the same condition, however my wife was already pregnant again by the time we got a confirmed diagnoses - we were offered an abortion - a decision we would not & could not go through with & are so glad we didn't.
       
      Regards,
      Howard & Brenda Savage ( Adrian - complex IV mito & Aaron)
      Toowoomba, Queensland, Australia
    • nikki26nzder
      Thanks for your reply howard and brenda, I know that no-one will no for sure,his dad and i are in the mindset that because she is healthy and doing well,all
      Message 2 of 4 , Sep 1, 2009
        Thanks for your reply howard and brenda,
        I know that no-one will no for sure,his dad and i are in the mindset that because she is healthy and doing well,all will be fine "positive thinking",just dam scary as our son was fine until 9 months of age doing crawling,saying mumma and dadda just starting to walk holding on to the furnitureetc..then nothing..when i had our daugther just on 4 months ago doctors have been keeping a close eye on her and has now been reffered to the developmental paed..it took us 12 years to get a diagnosis for our son,mainly due to them looking into other disorders etc..our pregnancy was a huge shock found out at 25 weeks,and due to how jake is genetics were very interested in (our wee daugther)..No biopsy will be done unless of course something becomes apparent..Just wanted to put the question out there as we do see genetics again in 2 weeks time...I would have been like you to if i was given that question,I wouldnt have one either....All we do is enjoy each and every day,we take our kids on holiday to brisbane australia each year to give them something extra to look forward to......Thanks for replying to my question....
        have a good Evening
        ....................................
        Nikki and Dan parents of Karl,Jake,Sarah New Zealand
        Jake has,CP spastic quad,both hips plated,epielpsy,spinal mynoclonus,worsening
        bowel issues (getting an ACE and NIssen done on 30th OCt),botox for
        hamstrings,Mito IV,continously peg feed,Multifocal Epilpsy,recurring Kidney
        Stones,Osteopenia etc






        --- In Mito@yahoogroups.com, "Howard & Brenda Savage" <hb4jc@...> wrote:
        >
        > Our oldest son Adrian (14yrs this month) has complex IV mito - was severely affected from birth & was 14 months old before we had a diagnoses.
        >
        > He has a VERY HEALTHY younger brother. We were informed that we had a 1 in 4 chance of any future children having the same condition, however my wife was already pregnant again by the time we got a confirmed diagnoses - we were offered an abortion - a decision we would not & could not go through with & are so glad we didn't.
        >
        > Regards,
        > Howard & Brenda Savage ( Adrian - complex IV mito & Aaron)
        > Toowoomba, Queensland, Australia
        >
      • Lee Collins
        In my family one child is far more seriously affected than the others. Mito is heartbreaking. All we can do is enjoy our children and love them. It sounds
        Message 3 of 4 , Sep 1, 2009
          In my family one child is far more seriously affected than the others.
          Mito is heartbreaking. All we can do is enjoy our children and love them. It sounds like you're doing that. Hang in there. My heart goes out to all families suffering from this.
          Hugs & Health
          Lee
          --- On Tue, 9/1/09, nikki26nzder <mkp48@...> wrote:

          > From: nikki26nzder <mkp48@...>
          > Subject: [Mito] Re:Has The same Mito Complex affected your other children....
          > To: Mito@yahoogroups.com
          > Date: Tuesday, September 1, 2009, 6:57 AM
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          > Thanks for your reply howard and
          > brenda,
          >
          > I know that no-one will no for sure,his dad and i are in
          > the mindset that because she is healthy and doing well,all
          > will be fine "positive thinking",just dam scary as
          > our son was fine until 9 months of age doing crawling,saying
          > mumma and dadda just starting to walk holding on to the
          > furnitureetc. .then nothing..when i had our daugther just on
          > 4 months ago doctors have been keeping a close eye on her
          > and has now been reffered to the developmental paed..it took
          > us 12 years to get a diagnosis for our son,mainly due to
          > them looking into other disorders etc..our pregnancy was a
          > huge shock found out at 25 weeks,and due to how jake is
          > genetics were very interested in (our wee daugther)..No
          > biopsy will be done unless of course something becomes
          > apparent..Just wanted to put the question out there as we do
          > see genetics again in 2 weeks time...I would have been like
          > you to if i was given that question,I wouldnt have one
          > either....All we do is enjoy each and every day,we take our
          > kids on holiday to brisbane australia each year to give them
          > something extra to look forward to......Thanks for replying
          > to my question....
          >
          > have a good Evening
          >
          > ............ ......... ......... ......
          >
          > Nikki and Dan parents of Karl,Jake,Sarah New Zealand
          >
          > Jake has,CP spastic quad,both hips plated,epielpsy, spinal
          > mynoclonus,worsenin g
          >
          > bowel issues (getting an ACE and NIssen done on 30th
          > OCt),botox for
          >
          > hamstrings,Mito IV,continously peg feed,Multifocal
          > Epilpsy,recurring Kidney
          >
          > Stones,Osteopenia etc
          >
          >
          >
          > --- In Mito@yahoogroups.
          > com, "Howard & Brenda Savage"
          > <hb4jc@...> wrote:
          >
          > >
          >
          > > Our oldest son Adrian (14yrs this month) has complex
          > IV mito - was severely affected from birth & was 14
          > months old before we had a diagnoses.
          >
          > >
          >
          > > He has a VERY HEALTHY younger brother. We were
          > informed that we had a 1 in 4 chance of any future children
          > having the same condition, however my wife was already
          > pregnant again by the time we got a confirmed diagnoses - we
          > were offered an abortion - a decision we would not &
          > could not go through with & are so glad we didn't.
          >
          > >
          >
          > > Regards,
          >
          > > Howard & Brenda Savage ( Adrian - complex IV mito
          > & Aaron)
          >
          > > Toowoomba, Queensland, Australia
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