Sweet Marley's Fredericksburg, Texas

Get to know the real Sweet Marley.
Our youngest daughter Marley was born with a very rare genetic disorder called Rhizomelic Chondrodysplasia Punctata or RCDP. RCDP is so rare that there are less than 100 children currently living with the disease. The statistics for RCDP are very grim. Most children die before they reach their 2nd birthday and if they do survive beyond that it is with profound mental and physical retardation.

When Marley was first diagnosed we were told to take her home and put her on morphine and hospice because the likelihood of her surviving to a year old was very slim. Fortunately we chose not to listen to that Dr. and instead brought her home and enrolled her in every possible therapy we could. Over the course of her short life she has had hundreds of hours of therapy. From speech to vision, occupational and physical therapy she has done it all many times over. We of course first give thanks to God for Marley’s amazing progress but after that the credit goes to her phenomenal pediatrician and therapists. Marley is so blessed to be surrounded by a team of people who refuse to believe that a diagnosis is all that she is.

Marley is literally one in a million and we have no idea what her long term prognosis will be. The great news about that is no one else knows either and Marley writes her own story page by page.