Poor little boy...

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I found a website about a boy with something called Krabbe's disease, and anyway, when I read about him, I started crying, and when I got to the last few parts, I lost pretty much all control of my emotions. It was a little kid, who was so bright and active, and he lost all the ability to walk and talk, and in the midst of all the suffering, he was happy, and (I'm a Christian, by the way) he was actually singing hymhs, preaching, and teaching others about the Bible, and before he died, he was singing about joy in the midst of suffering...he was only about three or four...he was so smart and vibrant...I can't believe little kids have to suffer like that, and he was the bravest kid I've read about... I hope his parents are OK, but they are probably sad, too...I want to help people like that, but this is the saddest story about things like that I've come across...

Pulls me back to my father in law's deathbed. We who are left cannot but be sad, no mattrer how much faith. Jesus - even knowing what he's about to do - cannot but weep over Lazarus.

What is the site?

I'm also interested in the site.

Ugh...Krabbe's disease....horrid....

~Kate

The phrase "krabbe disease" is set as an alert in my google reader and this evening your post popped up on my page. As I was reading, I realized you were talking about my son, Judson.

Thank you so much for posting about him, his story, and for helping us raise awareness of Krabbe disease. Your compassion means so much!

Because I am new to this forum, it will not let me post a link but his web address is STORYofJUDSON . com

Thanks for caring!!

I'm going to look at the site. Thank you for the information. I work in the neurological field and the metabolic/degenerative disorders are some of the most difficult and heartbreaking to deal with and raising awareness is going to be key to development of new treatments.

~Kate

While I must commend the small child you mentioned to be able to maintain faith of some sort (it often helps in the face of certain death), I wish I could say otherwise but I can only offer condemnation toward the child's parents for not getting their DNA checked for such serious diseases, as then they could have made alternative arrangements for raising a family i.e. adoption, without producing offspring that would inevitably undergo undue suffering in the course of their life. My beliefs are that parents should aim no less than the best possible outcome for their children genetically and gestationally speaking, and that to do otherwise, given that the couple likely come from a society with sufficient scientific knowledge for such options as genetic counselling and DNA analysis to be available, I regard that as an evil act against such children born from such wilfully ignorant behaviour, on the same kind of level as withholding polio vaccine from children and then such children getting paralysed from polio. I find such acts criminal and (if one wishes to apply religion to such matters) sinful.

This also extends to myself - I actually strongly consider not having any biological children at all, even should I have any kind of sufficiently close and committed life-partner (I hesitate to use the word 'wife', as in the Australian society I am from, divorce is very prevalent and most children are out of wedlock anyway) as the Asperger Syndrome in mine own family is genetic (matrilineal if you want to be specific); unless what the media often disparage as 'designer baby' technology would be available for me and whoever I would be with at that unknown future time to use, then I would wholeheartedly embrace that technology to erase any serious genetic diseases (and that is all I would wish it to be used for). Otherwise, likely I will adopt a child, preferably one from my own country, or (if my future wife/life-partner should be foreign to Australia, her country).

However, for obvious reasons, I am not against people being made more aware of genetic disease, especially this "Krabbe's disease" which I have read an overview on Wikipedia about (it's not a primary source and can be a bit leery and prone to vandalism, I know, but it's a start). To be honest, reading that clinical overview of symptoms and then mentally applying them to an innocent child as you mentioned, although it does not bring me to tears (I am an incredibly emotionally jaded person and it takes a monolithic force to make me cry, unfortunately) it nonetheless makes me feel morally nauseated and disgusted that anyone should have to endure such (I guess that given that explanation one could see why I am an advocate for genetic counselling at the very least).

Krabbe disease is inherited in an autosomal recessive way, which means that both parents must be carriers for the disease to occur, BUT carriers are not afflicted with the disease. Each pregnancy carries a 25% risk of an affected child if both parents are carriers. It is a rare disease (affects about 1/100000 people, as opposed to, say, cystic fibrosis, which affects about 1/31000 in the US), so it is very unlikely that the parents knew they were carrying the gene or even knew to test for it. If they had a *previous* child with the disorder and didn't receive genetic counseling, you'd have a point. However, there was almost certainly nothing they could have done to prevent this unfortunate occurrence. Such is the nature of rare recessive disorders

~Kate