Prader Willi Awareness Month

I don’t have children of my own, but I’m a proud Auntie.  I brag at every opportunity and share their photos excessively.  I’m fortunate that two of these magnificent little girls are my sister’s children. I absolutely adore each of these babies.  My oldest niece is 4 years old and my youngest is 3 years old.  I’m blessed that my sister has made me an integral part of their lives.  I remember putting a flashlight on her belly during pregnancy to feel “my babies” move and eagerly counting down to their arrival.  I started spoiling them pre-birth.

My younger niece, Ciara has a rare disorder called “Prader Willi Syndrome.”  When you ask my sister what PWS is below is her response:

PWS is a rare, life threatening disorder with an unknown cause. There is no cure. There are no words to explain how it has changed every aspect of our lives. Aside from developmental delay there are multiple medical complications. Many kids don’t make it to adulthood.

It’s very difficult for my sister to discuss her daughter’s diagnosis.  Both my sister and her husband are amazing parents.  I watch them in awe as they balance full time careers, a 4 year old daughter,  a 3 year old daughter with a rare disorder and now two foster dogs.

Parents with a special needs child are our silent heroes. Their only goal is for the comfort and well being of their child. They quickly learn how to seize the day because they know the value of life. They take nothing for granted.

Our entire family celebrates when Ciara reaches a milestone that most parents take for granted.

Our entire family loves someone with a rare disorder now.

My sister’s family lives a lifestyle that is rare.  Frequent doctor visits, therapy since birth. Diet modifications. Nightly growth hormone injections. They live a routine, one that is uncommon to most families.

My niece illuminates pure, unconditional love. She loves me for who I am.  She can teach the entire world a thing or two about love at just 3 years old.

My niece is the definition of strength, hope and courage.  She is brave, she is my niece and I’m proud to be her Aunt and share her DNA.

May is Prader Willi Awareness month.  This is for my beautiful niece Ciara Elise who defines bravey and courage.  She is my little hero.

Click here for information on Prader Willi Syndrome.

The below photos are a collection of her mother’s favorite pictures.


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