Leukodystrophies....

[#1Nana]

I was reading a post from last year r/t a youngster with ALD. I would like to pass on some info that might help one of you in the future r/t leukodystrophy.

THERE ARE 16 KNOWN LEUKODYSTROPHIES!!

There are web sites that will help you out both professionally and personally in dealing with families affected with these horrible diseases.

http://www.huntershope.org Jim Kelly's son, Hunter, has Krabbe....Globoid Cell Leukodystrophy. Jim ( Buffalo Bills Hall of Famer) and his wife, Jill, established Hunter's Hope Foundation to "address the acute need for information and research with respect to Krabbe Disease and related leukodystrophies." Quote

from HH's Mission Statement. HH is a wealth of information. Feel free to contact HH. at [email protected]

http://www.krabbes.net and http://www.krabbes.com will give you much info. The web sites are open to ALL leukoystrophies and every one is welcome. On the message board, you will find family support, ideas from families r/t treatments and meds...what works for one, may not work for another! There are no "textbook" treatments. You will find a page "Krabbe's Kids" that will lead you to the stories of many leukodystrophy kids.

http://www.mitchellkyle.com This is my link to these disease's. My Grandson's, Kyle and Angel Mitchell, were born with Krabbe and underwent Cord Blood Transplants at Duke University last year. Their story is on the web site. A new brother is due in November and has already been diagnosed with Krabbe. He will have a CBT shortly after birth. Prognossis is good.

There are links on the above mentioned sites to other related sites. Pease take time to go to the sites.

Reading leads to educatuion and awareness.

Awareness leads to newborn screening and early detection.

Newborn screening and early detection lead to treatment....

Saving ourr precious kids.

As professionals, we need to be vigilant and listen to parents when their "gut feeling" says, "something is not right". Be their advocate, following through for quick diagnosis, treatment and care.

As a nurse and a grandmother, I have learned more in the past 18 months than I ever dreamed!! Given the opportunity, I talk about the diseases. I just found another opportunity at allnurses.com!! Thanks!!

Students...Many families are more than willing to share their stories with info for a school paper/project. There is a note at http://www.krabbes.org left side of page r/t having papers posted on one of the Krabbe sites. I will be happy to give anyone more info.

Thanks for listening.

#1 Nana