RHIZOMELIC CHONDRODYSPLASIA PUNCTATA SYNDROME

My cousin Grant was born on October 30, 1986, with an extremely rare genetic disease called Rhizomelic Chondrodysplasia Punctata Syndrome, or RCDP.  He died on December 5, 2009, at age twenty-three.  There are less than one hundered kids living with RCDP worldwide, and currently there is no treatment or cure.  My family was very blessed to have Grant for so many years because most RCDP babies die in utero or within the first two years of life.  

It wasn't until after Grant's death that I stumbled across the website www.rhizokids.com.  Since then I have met several RCDP families from across the world.  My husband Jed and I also traveled to Centre, Alabama, in June 2011 to attend the third annual Rhizo Kids International conference.  Rhizo Kids International is a non-profit organization to raise awareness and funding for research.  At the conference I listened to three doctors from overseas who specialize in RCDP research, treatment, and nutrition.  

My cousin Grant was basically a newborn baby his whole life.  At age twenty-three he was wearing a size 2T.  His parents, my phenominal aunt and uncle, had to care for him around the clock, making sure he ate through his feeding tube every three hours.  He wore diapers his entire life.  Common physical features of RCDP babies are the shortening of the upper limbs, cataracts, coronal clefting, and joint contractures.  Like a newborn, Grant could laugh and cry.  He never learned how to walk or talk.  Regardless, he taught us so much about what is really important in life.

I share this story about my cousin Grant to explain why I don't allow my students to use the "r word."  Although many of these kids can't walk or talk, they have taught everyone they've met the important things in life: love, compassion, understanding, and joy.  We are all different, and that is okay.  I hope every student feels comfortable inside the four walls of my classroom.  

Please visit the website in blue above and meet my RCDP buddies!