This is so sad, I just watched my local news (Texas) and there is a family that has a set of twin girls (4yrs) & they have one that is as bad as Harley was & they just got told their 3yr old has it too. I am holding back tears right now (my sons at home & he wouldn't understand why mommy's crying) Here's a link to their story http://www.wfaa.com/news/health/Rare-disease-strikes-twice-in-Erath-County-family-83004062.html
Lets pray for this family, send thoughts or whatever you do. They are going to need all the support that they can get right now.
omg that is so sad! i have 2 little girls and i cannot imagine the pain that family is going through!!
Oh no! I don't like hearing other kids have Alpers. I've noticed, though, all the parents I've met who have kids with Alpers... they're all girls. I haven't found anything saying girls are more likely to have Alpers (actually, everything says it hits boys and girls the same amount... hmm...), so I find it strange all the cases I've heard of are girls. This will be the 4th and 5th girls I've heard of in the U.S. who have/had Alpers. I'm sure there are more, these are just the moms I've met online. I e-mailed the mom (her e-mail address was on this website: http://thefightagainstalpers.webnode.com/) and asked her if there's anything I can do for her, I'll let you ladies know when she answers me back. Just so you all know, it's a 25% chance with every kid that that kid has Alpers. It's not a 1 out of 4 kids thing, it's each kid has a 25% chance of having it. Once you're tested, you can test future pregnancies at 10 weeks to see if the baby has it. From there you can continue on, knowing all the torture your kid will be put through before they die, or terminate the pregnancy. That's what I've been so worried about when I think about having more kids...
That is so sad. My heart breaks for these poor mothers.
Made by Emily J.
Update on Lilly
- skywatcher1973
on Jan. 29, 2010 at 1:30 PM