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Myotonic dystrophy in the family twice

Posted Mar 11 2011 2:53pm
Since I started writing my blog I have had a few really lovely emails saying thanks for writing it.  A couple of days ago though, I was especially pleased to get a facebook message from a relative in Australia.  Her name is Sandra and by a remarkable coincidence she has got Myotonic dystrophy.  “Why is it a coincidence?” you might wonder.  Myotonic dystrophy is genetic after all!  Well the reason it is so strange, is that Sandra and I aren’t even related by blood.  Her partner Rodney is Steve’s cousin.

I have never met Sandra or Rodney, though I met Auntie Ann (Rodney’s mum) when she was in England a few years ago.  We were telling her about the pre-implantation genetic diagnosis (PGD) as I think we were doing it at the time.  Dexter hadn’t been born.  At the time she didn’t know that just a couple of years later, her son would be in the exact same position as Steve.

Muscular dystrophy is rare enough, to have that enter a family twice would be unusual.  But for us to have the exact same type of muscular dystrophy is really quite amazing!  And on top of that, Sandra and I are both almost the same age, both got diagnosed within a few years of each other, both are trying to have a baby and now both are doing IVF with PGD.  Quite remarkable.
Does any one else have any strange coincidences like that in their family?  If so leave a comment and tell us about it.
Sandra said she didn’t mind if I posted her message.  It was so nice to get it.  Just this one message would have been enough to make me glad I started my blog, never mind the others I have as well!   Below is her facebook message:



Hi Shona,

Congratulations for your successes so far with the pgd, We hope things continue to go well.

I thought I'd just let you know we've had some great news. After reading your blog Rodney tried doing a search for pgd and found a assistance program here in Australia. The applications for the program closed the end of January, which only gave us a couple of weeks to get everything together (letter from specialist,GP and last years tax). We quickly gathered what we needed and sent it off, with little real hope of being successful this time but hopeful for later in the year possibly the next intake or two. Then last Friday the clinic rang with the news that we had been accepted for a fully funded position in the pgd program. It's all moving very fast with our first appointment a week from today(Tuesday). I'll try to keep you informed or our progress.

Rodney has already started complaining about all the driving with three trips to Sydney(5 hours drive each way) in the first eight days, but I know he doesn't really mind the trips to Sydney too much. And a few trips to Sydney will seem like a cheap price to pay if everything goes well in the end.

Now, I'd really like to thank you, and thank you a lot. If we hadn't read your blog and written to you, we'd not have looked for a assistance program and would have continued struggling to find what to do and as I'm now 34, the clock was ticking. Thank you again for our chance for a child\Children.

Best wishes,
Sandra

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