Tag: parryrombergsyndrome

Today Is Rare Disease Day  2016 ….Daddy I Wish……

Daddy I Wish….originally posted on my blog You Are Already Beautiful Parry  Romberg Syndrome and Me My story by Cheryl Rick Klein 

I am sharing this very personal story to support #rarediseaseday and #NORD 

If you know someone suffering from a rare disease please reblog and share this post originally written in 2010 to #raiseawareness , #educate and #support others living with a #RareDisease 

  

It has beem 16 years since you left and yes daddy I am still fighting to survive and won’t give up. 
  

Dedicated with love to MANNY RICK my dad who died May 23, 2000

My father was the first to notice that something was very wrong with my face when a small cut by my chin didn’t heal. He wasted no time and took me to every medical expert to find out was was wrong.

He held my hand and told me that I was still beautiful and told me to remain strong. He told me he would never give up to make me well again.

He showed me what true beauty is. You won’t find it in any mirror.
My dad lost both his legs to complications having diabetes.

I told him what he told me so many years ago.

Be strong, you are a beautiful person.

And he was………

It was the day of my little sister’s wedding. I went over to my parent’s house

to get ready for the big event.

Suddenly, my mother, and my two sisters were gathering their gowns and were heading to the door. ” Where are you going ? I asked.”

We have to get to the temple early we are having our makeup done professionally. They didn’t make a appointment for me.

My face said it all. My dad who was watching the situation remarked “I told you it wasn’t right to not include Cheryl.”

I just stood speechless as they pushed past me and headed out the door.

I ran upstairs to my old room and cried. I didn’t understand why I was not included. I lost half my face to Parry romberg Syndrome and it took years of cosmetic procedures to erase the damage on the outside, however in that moment I knew nothing could erase the emotional scars I tried to hide from the world. 

Could my own family be so shallow and actually be jealous I became too pretty???

My father called me to come downstairs.

He had tears in his eyes when he saw me. He opened his arms and hugged me tight. We cried together in silence. 

Then he said the most beautiful words to me I will never forget.

” You don’t need a make-up artist you are so beautiful just the way you are.”

I loved my dad more than anyone in the world. He saw the pain I hid in a smile.

My father also was fighting for his life after he was diagnosed in his late 50’s with Diabetes.

Diabetes is also a auto-immune illness that ravaged my father’s body and eventually took both his legs. 

I told him the same words he told me years ago. “You will always be beautiful to me daddy.” I hugged him tight and he cried like a baby in my arms. 
Parry Romberg Syndrome became a official rare disease in 2001.

Sadly my dad never knew I was finally diagnosed, he died just one year before.
   
  

Mirror Mirror on the Wall

My mother told me more than once I changed everything about myself when I started my first p/t working in a posh upscale north shore boutique.
She was partially right. The two thirty something owners were both tiny, clever and very intimidating. I was totally shocked when “Dina” a size 2 petite brunette hired me after my interview.
Still lacking confidence in myself and my looks, which radically changed through my teens. My facial disease seemed to go into remission when i was about 14 and every month since then I was getting silicone shots to “fix” the damage to my face. Unlike botox and other modern fillers where you see instant results, silicone was administered in very little amounts each month and it took years and over 100,000 dollars until nobody noticed anything was wrong with my face. Everyone but me. Going through the trauma of being told I was going to die by the age of 15. the sheer terror of people staring at me and going through adolescence with a facial deformity was always going to be part of who I was forever. I scars were now almost invisible but I was and still am scared forever.
Sometimes good things come out of very bad experiences. I believe everything happens for a reason.
I learned that “looks” are not what truly make you beautiful. I was a absolutely gorgeous child and even was scouted by Ford Models at age 5 while walking with my dad in NYC.
Suddenly anyone at anytime can lose their “looks” like me. It happens. I depended on my family, friends, my outgoing personality, my love of playing the violin and tennis to get through the hardest years of my life.
Suddenly I realized It was time to look in the mirror again. Ironically I had no choice, the entire store’s walls were completely mirrored, lol.
I guess this was a sign from God that it was time to look to the future and leave the past behind.
That’s exactly what I did…..

/home/wpcom/public_html/wp-content/blogs.dir/782/54902911/files/2014/12/img_0843.jpg