Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Baby diagnosed with terminal Metachromatic Leukodystrophy

Posted by   + Show Post

Please, if anyone here knows or has dealt with this terminal illness, please help my friends and their baby...

We are hoping to get the word out and find anyone who can help them... or any doctors or alternative medicines... anything. 

by on Feb. 1, 2013 at 8:49 AM
Replies (11-20):
by on Feb. 1, 2013 at 5:55 PM

St. Judes should be able to provide some help or give a referral if they can't.

by on Feb. 1, 2013 at 9:48 PM
I've seen a website I pray Gods blessings on everyone involved
Posted on the NEW CafeMom Mobile
by on Feb. 2, 2013 at 6:58 AM
Im so sorry prayers are with them wish I knew something that would help
by Bronze Member on Feb. 2, 2013 at 8:52 AM

My prayers are with your friend and her family. My heart breaks for them.

by Ivy on Feb. 2, 2013 at 12:20 PM

 I'm so sorry for your friends.  I'm not familiar with this, but you might check out a group here called Raising Special Needs Kids.  You might find some help, and definitely some support, there.

by on Feb. 2, 2013 at 8:47 PM

That is so sad.

Be cautious in 'helping' them in their desperation: there are a lot of con artists who make a LOT of money off people in that position. They're very vulnerable now.

by on Feb. 3, 2013 at 1:30 AM

I am so sorry to hear about your friend's child. It is so hard to deal with a child who is sufferin and who has serious illness.  We want to be able to protect our children from all harm.  Howeer, we can't always do that.  I firmly believe in prayer so if she can have people at church pray for the child and ask people on Cafe Mom and on FaceBook to pray would be good.  Prayer makes a diference.  Yet one has to be willing to accept the Lord's will, too.  My belief is that children to 8 years old are not responsible for any sin as they are too young.  Therefore, it is a straight shot back to Heavenly Father.  That doesn't help much when you don't want them to go.

I don't know much about this illness.  You may be able to google it and find out more.  There is the Cancer (place of )/America in Tulsa .  I don't know how old the child is.    If thechild is old enough to eat or drink then things like broccoli, cauliflower have  good cancer killing properties to them so might be able to blend them or juice them an give the child the juice.  But if only a baby can't do that. 

This is so had when someone is looking at such a serious illness.  You probably should ask for 2nd opinions and then have to pray about it and make the best decisionyou know or hope to make.  Ask about any cutting edge things or any studies.  Good luck.


by Bronze Member on Jun. 24, 2013 at 4:36 AM

Praying for baby and family

by on Jun. 24, 2013 at 4:48 AM
Please get her in touch with this friend of mine, this mama is amazing, her story is life-changing , and she can help them more then your friends could ever so many ways!
It's weird to copy/paste links through my phone, if these don't work, I'll pm them one by one.
I'm so so so sorry for your friends, my heart breaks for them.

THIS IS WHO THEY NEED TO CONTACT!! Feel free to pm me at any point.

Posted on CafeMom Mobile
by Bronze Member on Jun. 24, 2013 at 7:31 AM

My prayers are with you and your friend. My heart goes out to them.

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)