Oh so sad. I have a family friend who's daughter had the same thing, but a milder case. She passed away at 10, it was so hard for her family and I was always amazed by their strength.
Can't complain of a hard day when their are people out there going through things like this. Heart wrenching - yet her love is so beautiful and evident.
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Thank you for sharing. I voted for them tons in some contest recently but I've never seen her blog before so I'm really interested.
ETA: I can't thank you enough for sharing her blog. I've read another, about a darling little boy named Jonah and thought I knew about EB but she is such an incredible mother, person, ect. She may not be lucky to have EB in her life but EB is very lucky to have her, I can see her being a powerful spokeswomen for the disease in the future.
It boggles my mind that people can be so ignorant to make comments that she should end her child's suffering and she shouldn't continue to "breed". Never mind it's illegal to kill your child and that she's not at all talking about having more kids there is the simple fact that she and her husband are now divorced so should she have additional children some day they would have an entire different genetic base. How she handles the head up their ass comments with such grace blows my mind.
Thank you for sharing. I voted for them tons in some contest recently but I've never seen her blog before so I'm really interested.
ETA: I can't thank you enough for sharing her blog. I've read another, about a darling little boy named Jonah and thought I knew about EB but she is such an incredible mother, person, ect. She may not be lucky to have EB in her life but EB is very lucky to have her, I can see her being a powerful spokeswomen for the disease in the future.
It boggles my mind that people can be so ignorant to make comments that she should end her child's suffering and she shouldn't continue to "breed". Never mind it's illegal to kill your child and that she's not at all talking about having more kids there is the simple fact that she and her husband are now divorced so should she have additional children some day they would have an entire different genetic base. How she handles the head up their ass comments with such grace blows my mind.
exactly! i was also blown away by her devotion ... it isnt often that i read a blog like this and really feel that the only motivation is love. she is a terrific mom.
Re: "eb"ing a mommy
Thank you for sharing. I voted for them tons in some contest recently but I've never seen her blog before so I'm really interested.
ETA: I can't thank you enough for sharing her blog. I've read another, about a darling little boy named Jonah and thought I knew about EB but she is such an incredible mother, person, ect. She may not be lucky to have EB in her life but EB is very lucky to have her, I can see her being a powerful spokeswomen for the disease in the future.
It boggles my mind that people can be so ignorant to make comments that she should end her child's suffering and she shouldn't continue to "breed". Never mind it's illegal to kill your child and that she's not at all talking about having more kids there is the simple fact that she and her husband are now divorced so should she have additional children some day they would have an entire different genetic base. How she handles the head up their ass comments with such grace blows my mind.
br
exactly! i was also blown away by her devotion ... it isnt often that i read a blog like this and really feel that the only motivation is love. she is a terrific mom.
thinking about it is making me cry again.
the secret blog
I mean, she had to make the decision to let her baby go blind. waaaaaaaa
seriously, i am a mess. ugh.
the secret blog