1 lp just starting battle, 1 lp wins battle

[Guest guest]

2 rare lp kids in the news, 1 of whom had a stroke unfortunately

after surgery for a brain aneurysm is recovering and you can actually

send her a card, if ya want, and the other 1 fought the NHS (National

Health System, I'm assuming) of the UK and won funding for her costly

medication.

The 1 who is recovering is a Primordial lp and her name is, ,

no pic.

http://tinyurl.com/yyp6cb

The other one is a Hurler Scheie syndrome lp and her name is,

Hayleigh, and her pic is on the second link.

Winning the funding:

http://tinyurl.com/yj6z57

Just her:

http://tinyurl.com/ye3pjq

When I read the one on Hayleigh having Hurler Scheie, I went, what is

that?????? I had heard of Hurler syndrome, but not of this one. So I

googled it and apparently it's a combo of the two which also exist as

separate syndromes, Hurler and Scheie.

One great website that my googling led me to, which I had never known

of before is this one, you gotta check it out.

http://www.whonamedit.com/

Now, who named it.com won't give you the origin of the words 'midget'

or 'dwarf', sorry, folks, rather it " is a biographical dictionary of

medical eponyms. It is our ambition to present a complete survey of

all medical phenomena named for a person, with a biography of that

person. Eventually, this will include more than 15.000 eponyms and

more than 6.000 persons. "

For example, I typed in 'Diatrophic' and the following 2 results came

up, which I'm guessing here are the same as Diastrophic dwarfism, but

more specifically they include names of the ones who first discovered

it and/or were first associated with it? I didn't spend much time

deciphering the results, so I'm not sure if they are just alternative

names for Diastrophic dwarfism or they are distinct variations of it?

In any case, the site was interesting to say the least and

informative to say the most.

Burgio's pseudodiastrophic dwarfism:

http://www.whonamedit.com/synd.cfm/1314.html

Lamy-Maroteaux syndrome:

http://www.whonamedit.com/synd.cfm/1618.html

~grady