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
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.
‘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
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.