Rare disease

My WonderGirl

February 21, 2019

I’m Deema
TOp categories
Design
Moodboards, room styling..etc
DIY
Paint is my favorite way to transform a room.
Other
I often dabble in other topics
Pretty
On Fridays 

It was probably 10pm at night, and I vividly remember a man putting his hand on my back and telling me that it was going to be OK.  I was crouched over the side of the hospital bed exhausted, my daughter had finally fallen asleep, and he came in to change out the trash.   I don’t know this man’s name, but I will never forget that moment for the rest of my life.

The summer of 2017 is when our daughter showed us just how strong she really is.  That week in the hospital, and the following weeks, months, and over a year of steriods, chemo shots, bloodwork, physical therapy, and sudden life changes, my daughter continues to amaze me.  Let me tell you something about Zeina, she is one tough cookie.

IMG_4654

Zeina was diagnosed with Juvenile Dermatomyositis (JDM) almost 2 years ago.  It’s a rare and life threatening autoimmune disease that just 2 to 4 kids in a million get.  She pretty much won the disease lottery.  Basically the body’s own immune system attacks it’s own cells and tissues.  As of now, there is no cure.

IMG_4663

Another major life change?  UV exposure seems to trigger JDM.  Zeina can’t be in the sun for long periods of time.  And when she is, she needs full on sun coverage, sunblock, and has to keep taking breaks to go back in the shade every 20 minutes.  And while she has her moments of frustration, this little girl is beyond her years.  And hey, less wrinkles when she’s older right?

IMG_4664

Besides the constant thick layers of sunscreen, she’s pretty much off medication (for now).  She never complains about all the breaks in the park to sit in the shade while all the other kids are playing.  Doesn’t complain about all the breaks to sit in the shade while we’re on vacation and everyone else is playing in the pool.  No complaints about the needles, the doctor visits, or diet changes.  Like I said, she continues to amaze me.

IMG_4662

With that said, the disease is always there and she could have a ‘flare up’ at any time.  But for now, I’m just going to think about that man, that night, in the hospital.  I believe it’s really going to be OK.

Please share this post and help us raise awareness.   Here’s a link to a video I made for her when she was first diagnosed.  If you have a quick minute, please go watch it. And if you’re local here in the Los Angeles area, please come join us for the first walk in Southern California on Saturday, February 23rd at Griffith Park from 10am-12pm  There will be food trucks, games, music, and much more.

Love,

Deema

 

 

Add a comment
+ show Comments
- Hide Comments
  1. Jenny says:

    Ohhhhhhh this gave me tears. What amazing humans you both are. She’s lucky to have such a fierce loving momma. 🖤 xo

  2. Shes a wondergirl for sure. And a beauty. What a sweet darling!

  3. Cinthia says:

    You have such a brave girl, and you are too; both of you are soo lucky to have each other, she is a special lady.

    • Rema says:

      May Allah protect her and may she never experience any flare ups ever again ❤️
      Deema look this song up on YouTube… Marwan Adham… tallet el helwe ❤️

  4. Terra says:

    What a brave beautiful child. Prayers for Zeina that God may watch over her always and keep your sweet girl healthy. Thank you for sharing her story and for bringing for awareness to this horrible disease. I have never heard of it.

    Xo

  5. Ryann Cleary says:

    She’s a little warrior! Thank you for sharing her story!

Leave a Reply

Your email address will not be published. Required fields are marked *

Browse By Category

DIY

Design

Entertaining

Gift Guides

Other

DIY
design

Are you in Instagram?

Follow me there, I share a lot of the behind the scenes there.  We can be BFFs.  

Follow me

Patio Reveal

My favorite reveal to date.  Read about it below.

Read more here

Get On the List

Let's be friends!  I promise I won't spam you.  

I've heard a rumor that every time someone signs up, a puppy is born.  

I'm in!

Join my community.  

Instagram

Follow me on Instagram!  Let's be friends.

@prettyonfridays