My son's condition is not life threatening so doesn't sound as severe as your scenario ... basically the nerves in his feet and hands deteriorate causing muscle wasting, pain and loss of function (not unlike Muscular Dystrophy I guess?). Its a degenerative condition that progresses at a different rate for everyone so its hard to know what will happen. Supposedly it most commonly shows up in adolesence but my son showed symptoms at his 3month checkup. He is 3.5 and can walk but can not jump, run or climb stairs yet. He may end up in a wheelchair. I worry that the early onset might be a sign of a more severe condition.
If we had another child with the same condition, it wouldn't be the end of the world... but I look at my son who is a beautiful, gorgeous little boy who struggles and will live with pain and progressively worsening disability for the rest of his life and I know that if I could take away that burden I would in a heartbeat! Hence us going down the PGD IVF route for the next child.
Its good to hear that you would be allowed to use your carrier embryo! I guess I hope that option is available to us, I will definitely be getting to the bottom of it at our scientist appt. I'm quickly becoming fluent in the terminology and scientist speak (I love Bones btw!). Its amazing that you got 7 unaffected embryos - I'm crossing my fingers I'm so lucky :-)
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