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Meet Emma.

Meet Emma.

Isn't she beautiful?

Emma is 16 years old.
She loves her puppies and is a sophomore in high school.
She is the second daughter of Sam (Samantha)
who was also my step sister for 10 years when we were growing up.

Such is the way of the world today with divorces and remarriages...
When each of our parents went their separate ways,
she and I lost contact for nearly 20 years.

Recently we reconnected and that was when I learned more
about what Sam and her family have been dealing with
for the past 8 years.

I was so touched by some of the words that Sam said to me
about Emma and about dealing with this disease.
They are both incredibly strong women.

As a mother and as a friend,
I felt compelled to share Emma's story with you.

Emma was born a healthy baby and she grew normally for the first years of her life.
When she was about 8 years old,
Sam started noticing subtle signs that something was wrong.
They were things that could have been overlooked and dismissed at first
but when they continued,
the doctors started running tests.

It was then that Sam found out that her daughter had a rare genetic disease
called MLD.

From their website:

Metachromatic Leukodystrophy (MLD) is a rare, genetic, degenerative,
neurometabolic disorder that affects approximately one in 40,000 people (primarily children) worldwide.
It is an inherited disease, but parents are typically not affected.
At present, it is a disease for which there is no cure.

Here is a link from the MLD Foundation if you would like to learn more

On 2/19/2004 when she was 8 years old,
Emma received an umbilical cord blood transplant at Duke University
in an effort to help stop the effects of MLD.

Her mom says she has been doing well in the past 8 years
and is considered stable though at this time,
there is no known cure for this disease.

This Saturday there is a walk to raise awareness and
to raise money for research to help find a cure

Your support in any way is appreciated by so many families
who are dealing with this.

From Sam:
'On World Leukodystrophies Day (Last Saturday in September), people ALL OVER THE WORLD
will be wearing identical t-shirts, walking for Leukodystrophies Awareness.
Some may walk 10 miles, some may walk five, some may walk one, and some may not walk at all.
But we will be united in heart and spirit,
raising awareness of Leukodystrophies!

You don't have to walk in a specific group or even walk at all to support
On Saturday,
I will think of Emma and of her family when I go for my walk.

Donations of any size are appreciated to help fund research and find a cure.
You can DONATE (click on 'Donate') any amount through Paypal

Emma and her family and so many other families
affected by this disease would greatly appreciate your support,
good thoughts and prayers.


  1. Thank you so much for sharing her story~She is such a precious angel~My heart goes out to her and her family~ xo Rachel

  2. She is such a beautiful girl, good luck on your walk.

  3. It is always so hard to make sense of it all when these things happen to children. Thank you so much for sharing sweet Emma's story with us and for shedding light on this disease! :-)
    Blessings to you friend,

  4. What a precious thing Emma is. I hope and pray that her battle continues to be a strong one. Thankful that you were able to reconnect. Strength of family can perform miracles. You will all be in my prayers.

  5. Courtney, you are such a good soul to share this with your many readers. I will click on the links, and read more about this disease. Thanks for making us aware of it!

  6. Hi Courtney, what a sweetheart she is. So glad you were able to reconnect with your sis. I've never heard of this disease, but I'll sure say some prayers for her and all those that have this. precious post.

  7. Courtney this is so heartwarming , that you met up with your family again. Emma is so special and strong to be handling all that she deals with.

    Love and Hugs

    Art by Karena

  8. What a sweet smile. Thank you for sharing Emma's story. My prayers are with her, and your family.

  9. Sending lots of love to Emma and her family. Emma's mamma has to be the strongest woman in the World! I am so glad you Courtney are posting this. We should appreciate what we have really BE GRATEFUL . Grazie Rita

  10. Courtney, thank you for sharing such a precious post! I have never heard of this and I appreciate the opportunity to learn more about this disease. She is lovely and so is her mom. I am so happy you reconnected! They are definitely in my prayers!

  11. Such a beautiful girl with such a moving story, Her Mum must be so proud of her.

  12. Courtney, what a shame this has struck a sweet little girl like Emma. Thank you for shedding light on this situation. I hope the research being done now can offer some help and hope in the near future.

  13. Oh what a precious story. She's beautiful and I am so glad to know about her and her challenges. Lisa~

  14. Kids should not have to deal with this. It is so unfair. It sounds similar to a type of MS. Both of my BFF's boys are in wheelchairs with it. She is a beautiful girl. I would like to donate. Every bit helps. The paypal link was not working though. Any ideas? Thanks for sharing her story.