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My Son has MLD

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Update on Tyler

snugglebearsmom
  • By snugglebearsmom · Posted August 25, 2008
  • Journal · 9 replies
  • Today was a very emotional day, we decided that we are not going to have him go through the transplant. It was the hardest decision I have ever had to make in my life however I feel that it was for the ...

white matter brain disease leukodystrophy

johnpaulangelchild
  • By johnpaulangelchild · Posted August 24, 2008
  • Discussion in Living with a leukodystrophy · 6 replies
  • I am a mother of a beautiful 10 year old boy who has this form of leukodystrophy, I would like to talk to someone who knows anything about it or anyone who has it....I just joined this website....so please ...

H-ABC

JOSHYSMOM
  • By JOSHYSMOM · Posted August 22, 2008
  • Discussion in Other leukodystrophies · 4 replies
  • I have been told there are only 12 cases in the world of this leukodystrophy so far. does any one know any thing about it? My son was fine until about 2 yaers old and then he started falling alot. His ...

my son joshua

LilLyn1105
  • By LilLyn1105 · Posted August 22, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 2 replies
  • hi my son is 6 years old was diagnosed january 16 2008 with ald he is now very badly affected by this horrible disease he has lost alot of weight and is ng tube fed can anyone give me some ideas to get ...

to those families with Schizoaffective diagnosis

annilar
  • By annilar · Posted August 15, 2008
  • Journal · 0 replies
  • We are a family with a 36 year old "gal" who suffered with schizoaffective disorder for some 20 years ( undiagnosed) . The hope I want to share is the latest meds and therapies in this field have helped ...

WELCOME TO HOLLAND - Inspirational

anedelk
  • By anedelk · Posted August 14, 2008
  • Journal · 3 replies
  • WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who ...

How to Deal with Life on Life's Terms

KateNDalton
  • By KateNDalton · Posted August 14, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 7 replies
  • I am a mother of a beautiful 4 year old boy who was diagnosed in January of this year with ALD. He didn't show any signs but my dad has AMN, my male cousin has AMN, my female cousin is a carrier and her ...

Hypomylination atrophy of the basal ganglia and cerebellum

JOSHYSMOM
  • By JOSHYSMOM · Posted August 2, 2008
  • Journal · 2 replies
  • MY son was recently diagnosed with Hypomylination of the basal ganglia and cerebellum. Does anyone have any info on this rare leukodystrophy ...

ALD Mom's who are carriers and Son's who have ALD

BMA
  • By BMA · Posted July 25, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 8 replies
  • I am almost 50 years old. I have a son who discovered he had ALD June 2004, his 4th year of college. We discovered he had Addison's disease when he was 13 years old but was never tested for ALD. It seems ...

today, July 25, 2008 ALD son

BMA
  • By BMA · Posted July 25, 2008
  • Journal · 0 replies
  • I am almost 50 (this year) and have a son, 26 years old. He was diagnosed with ALD at age 22 during his 4th year of college. He had a a bone marrow transplant October of 2004 at the University of Minn ...

livin each day

wordnerd58
  • By wordnerd58 · Posted July 25, 2008
  • Journal · 2 replies
  • I try to take it one day at a time these days. As things ge harder for me to keep up with I just try to do what I can that day and let the rest go. For anyone who ever knew before that is the exact opposite ...

How Did You Tell an Elderly Family Member About MLD?

carolrn
  • By carolrn · Posted July 24, 2008
  • Discussion in Family and friends · 3 replies
  • Our family has recently received the devastating news that our little "Abby" (my grand niece), 23 months old, has MLD and that this disease is degenerative and fatal. My mother, Abby's great grandmother ...

Team Hoyt

here4Matt
  • By here4Matt · Posted July 22, 2008
  • Journal · 1 reply
  • My mother just sent me this link about Team Hoyt, a father who does for his son all the physical things the son cannot on his own, due to CP. I've learned that so many leukodystrophies are often misdiagnosed ...

HDLS

Summer630
  • By Summer630 · Posted July 19, 2008
  • Discussion in Other leukodystrophies · 1 reply
  • I have a family member that has been diagnosed with HDLS. Has anyone heard of this disease? She is 39 years old and has 2 children. Our family went for genetic testing in 2006. The Mayo Clinic is who ...

HDLS

Summer630
  • By Summer630 · Posted July 12, 2008
  • Journal · 0 replies
  • Has anyone heard of Hereditary diffuse leukoencephalopathy with spheriods ?( HDLS) I have a family member that has been diagnosed with this disease. She is 39 years old. Just looking for anyone that might ...

Alexander disease

bkabo
  • By bkabo · Posted July 7, 2008
  • Journal · 11 replies
  • Could anyone give information on Alexander disease? If you know anybody with this disease or know someone who suffered from this disease I would like to get in contact. I have a 17 yaer old son suffering ...

Support your group and raise awareness with badges

Walter
  • By Walter · Posted June 20, 2008
  • Journal · 30 replies
  • Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

Love and Science 2008 - Next Month

applepie1281
  • By applepie1281 · Posted June 19, 2008
  • Discussion in Family and friends · 6 replies
  • My husband and I are making plans to attend the conference next month, 7/17-7/19. This will be our first trip to Dekalb for the conference, as our son was only recently diagnosed with Alexander's Disease ...

My Daughter Reese (4) has MLD.

4Reese

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The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The United Leukodystrophy Foundation Support Community is sponsored by the United Leukodystrophy Foundation in partnership with Inspire.