Thursday, February 11, 2010

An overdue introduction....

Boston Clark Butler!

Meet the Butlers

Kelly and Charlie Butler are the proud parents of Brooklyn and Boston. A beautiful family of 4 that has had more than their fair share of heartache. Brooklyn is 4 years old and is cute as a button, always smiling. Just before her second birthday the Butlers were hit with some devastating news, Brooklyn was diagnosed with Rett Syndrome. Rett Syndrome is a severe neurological disorder that takes seemingly healthy little girls and robs them of their ability to walk, talk or use their hands. They require 24 hour care for the rest of their lives. Kelly refused to let the diagnosis of her daughter break her, she started looking for ways to get involved with finding a cure and is currently working for a non-profit called Girl Power 2 Cure raising funds for Rett Syndrome research. People are naturally drawn to Kelly because of her kindness, love, and richly positive attitude. She is one of those people you just want to be friends with in hopes that some of her may rub off on you. She works tirelessly for her daughter and the thousands of girls with Rett Syndrome and does it all with a smile.

Last May disease struck the Butler household again when Charlie was diagnosed with Behcets Disease, a multisystemic disease that affects almost every organ in the body. Again, Kelly and Charlie took the diagnosis in stride, believing that things would look up. They were pregnant at the time and were looking forward to welcoming another blessing into their household. That blessing came sooner than they had expected when complications arose and Kelly gave birth to a son named Boston on September 12, 2009 - 10 weeks early. Boston weighed in at 2 pounds, 3 ounces. Charlie and Kelly joyously welcomed their sweet preemie into the world thanking God for his blessings.

Boston spent 10 weeks in the NICU where he went through a rollercoaster of tests, procedures, and complications, including NEC (Necrotizing Enterocolitis) – a life threatening condition for preemie’s. Just when things were starting to look up the Butlers were hit with more hard news - Boston was diagnosed with Down Syndrome.

Imagine, 3 incurable, rare diagnoses in 1 family would just about crush most of us but the Butlers continue to stand gracefully.

Today Boston is home although still on oxygen. Charlie and Kelly are now juggling therapy, doctors and specialists for both their children. You can follow their stories at: and

Please keep the Butlers in your prayers!

You can learn more about Down Syndrome here:
And more about Rett Syndrome here:


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Gramma Sandy said...

Love your blog and your dolls!
My granddaughter, Emma, needs one!
Pick Me!

Kelly said...

Thank you for sharing our sweet little guy with your readers!