Support group connecting families affected by Adrenoleukodystrophy (ALD).

Darlene Halverson Female Farmdale, OH United States: Share on Facebook

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The Blue Ribbon Sisterhood

Together we'll Shine Some Light On LeukodystrophiesSee More

Tracey Stuart joined Darlene Halverson's group Oct 23, 2011

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Colleen and Darlene Halverson are now friends Oct 5, 2011

Darlene Halverson updated their profile Oct 5, 2011

Wendy left a comment for Darlene Halverson

Hey Blue Ribbon Sister...glad to see that you are still in the Hood!!

Oct 5, 2011

~True Character is Not about how you treat someone on your Best Day. It's about How YOU Treat Them on Your Worst.

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Blog posts by Darlene Halverson Oct 5, 2011

The Blue Ribbon Sisterhood

Together we'll Shine Some Light On LeukodystrophiesSee More

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Darlene Halverson is now friends with Wendy and randi Oct 5, 2011

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Darlene Halverson left a comment for Wendy

hey sista , I'm back ....I deleted my other page.....gonna keep this one .It was my original page anyway. I finally was able to remember my dang pass word :)

Oct 5, 2011

ok , Guys and Gals.....I'm back !!! Finally was able to get back into my original account ....Yay !!!

Status posted by Darlene Halverson Oct 5, 2011

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Suean Groves commented on Darlene Halverson's photo

Hi Darlene, Your little man is beautiful - how is he going? he has a cheeky smile - I know things are hard - would love to chat

Little Warriors

Sep 10, 2010

Darlene Halverson is now friends with Nancy L Gordon, Margaret Caldwell and Tracey Stuart Sep 7, 2010

Darlene Halverson updated their profile photo Sep 7, 2010

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Photos posted by Darlene Halverson Sep 7, 2010

Profile Information

Are you a patient, friend, or relative?: Relative

When were you (or patient) first diagnosed?: April 17, 1997

Which form of ALD do you (or patient) have?: x-linked ALD

Please share your story with us...: A simple soul ... surviving ... in a very complicated world ... knowing that she's not home yet!

I am the mother of three amazings boys.My children have opened my eyes to all the little miracles and inspirations around me , that I often fail to see.Dylan, Jacob and Owen you three are truly AMAZING ♥ I have also been blessed to be married to my sweetheart of 17 years ! This journey hasnt been without moehills or mountains - it is the inspiration around me that keeps me going. I have learned so much

In April 2006 we found out that our son Owen was in urgent need of a bone marrow transplant . The doctors told us that Owen had six months to live. Right away we started searching for a donor. We found out that all three boys have the same exact HLA type , but could not use each others marrow because they all have ALD. In June we received the phone call that they found a double cord blood for Owen and it was a 4 out of 6 six match.
The experts told us we would go to The University of Minnesota Medical Center for Children. In July we headed west , we stopped and visited our family in Missouri . This was very hard because we decided it would be best to leave Dylan and Jacob here with my sister Sandy and her family. My parents and sister Charlotte also live close to Sandy , so there would be lots of family caring for Dylan and Jacob. We arrive in Minnesota on July 17 , and on Aug. 4 2006 Owen had his double cord blood transplant. My parents brought Dylan and Jacob to Minnesota so we could all be together for Owen. While Dylan and Jacob were in town the doctors wanted to have their MRI'S done . We soon found out that Dylan would need a transplant .
We were living a nightmare . On Oct. 4 2006 , just two months after Owens transplant Dylan receive a 6 out of 6 match bone marrow transplant. All three of my sons have Adrenoleukodystrophy (ALD). So far Jacob's MRI'S have been coming back clean , but it is a constant worry on all of our minds.
I feel as if it's a time bomb and not know if or when it may go off. It has been five years since our journey began . Owen is in fourth grade . Dylan is in 11th grade . Jacob is in 9th grade I am SO very Proud of my boys.

http://littlewarriorsaldawareness.blogspot.com/

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Lorenzo's Legacy

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Darlene Halverson's Blog

Adrenoleukodystrophy

At the age of 2 Dylan was diagnosed with Adrenoleukodystrophy , as was Jacob my 4 month old baby. This is a life threatening disease affects boys . The females are carriers and so I was the one who passed this awful disease to all three of my children. Aah...I know everyone is thinking including myself why in the world would you have another child knowing this.

Well after I had Jacob I wanted to have my "tubes" tied ,…

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Posted on October 5, 2011 at 9:30am

ALD WARRIORS

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Posted on October 4, 2011 at 8:12pm

Leukodystrophy Awareness Store 10% of sales goes to FIGHT ALD

Posted on October 4, 2011 at 7:00pm

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At 10:14am on October 5, 2011, Wendy said…: Hey Blue Ribbon Sister...glad to see that you are still in the Hood!!

At 10:50am on September 7, 2010, Kathryn Berry said…: Hello! Happy you are on here! I'm from Indiana so we are neighbors:) Hope you have a great day and that we can talk soon!