Since this page has been sitting empty - and is probably one of the most important things in our life - I thought I would add a few tidbits here about the disease, before I actually take the time to sit and create the page I ultimately want this to be.
A one stop shopping trip on a super rare disease that my oldest was unlucky enough to win, in the genetic lottery.
Eventually this page will consist of my daughter's story and an "as thorough as I can get" description of AxD, that the general layman ( me...you...and just about anyone who will run across this page) can follow.
Pictures. Words. Links. Resources. Stories of the few other children we know of that suffer from this wretched, disgusting, destructive disease.
Until then, please feel free to check out :
For General Information
The United Leukodystrophy Foundation
(AxD is one of MANY kinds of leukodystrophy)
The Alexander Awareness Network ( yup, this is my own creation )
until I get more time to work on this page here, please look at the "Links and Resources" page on the Awareness page!
For examples of what this disease DOES to children and their families
Brittany LaRoche's CaringBridge Site
Nicholas Jones' CaringBridge Site
If any of the information shared within any of these pages touched you in any way, please: come back here often, subscribe to individuals CaringBridge sites, Forward to friends, Donate. These families - my family - needs your help.
If the only thing you can do to help is forward or link any of this information to others, you will have made a difference.
In the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer
Imagine YOUR child was diagnosed with cancer.
Now imagine our child's doctor didn't know what cancer was, what it did to children, or how to treat or support families afflicted with it.
That is what Alexander Disease parents face every day of their child's illness.
AxD has only been diagnosed approximately 400 to 500 times since it's discovery in 1949.
It's hard to GET anywhere in the care of you child when you have to educate every medical professional you have to trust your child with.
Don't EVER think that educating ONE person and asking them to do the same, and so on isn't doing enough.
Someday I hope to say that I helped make AxD a disease that may be rare, but it's effects are widely known.
I want to know that every single new family with a Leukodystrophy or AxD diagnosis was immediately pointed in the right direction for support, information, medical care and HELP navigating this illness.
NO family should have to be adrift, alone and helpless in the care of their sick child.
Forward THIS PAGE or another like it to someone else today. Ask them to do the same.
Print this page out, or another like it and bring it to your doctor or pediatrician the next time you see them and ask them learn about AxD in honor of my child.
NO family should have to be adrift, alone and helpless in the care of their sick child.
Forward THIS PAGE or another like it to someone else today. Ask them to do the same.
Print this page out, or another like it and bring it to your doctor or pediatrician the next time you see them and ask them learn about AxD in honor of my child.
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| This is my daughter, Brittany in May 2009 - her prom |
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| Brittany, watching her daughters first steps Oct. 2010 |
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| Brittany at Maine Medical Center Dec. 2010 |
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| Brit and her Aunt Erica @ MMC 12-10 |
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| Brit and I @ Maine Med 12-10 |
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| Nicholas "Monkey" Jones 2009 |
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| Monkey - 2011 |
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| Nick May 2011 - smiling 'cause mommy asked him if he'd like to go for a wagon ride in the hospital. I've never loved someone I never met, so much. Alexander Disease shouldn't be part of his life. |
