Oh, hello - I’m so glad you found us!
In February 2008 our lives took a turn in a different direction when our daughter Emily was diagnosed at 18 months, with a rare chromosome disorder called Chromosome 17q21.31 Microdeletion Syndrome. Now called Koolen-deVries Syndrome.
We decided to share our daughter Emily’s story here at One Little Pooh, so that other parents out there, would have {something} to read & inspire them when they sat down to Google their child’s new diagnosis.
We know what it’s like to leave that appt. teary eyed, heavy hearted & confused. We know you are probably wondering what this all means for your child….and although we don’t have all the answers, we can share our journey in the hopes that others will gain knowledge through our experiences. We want you to know you aren’t alone.
Our daughter has shown us a glimpse of what life is all about. Like not taking the simple things in life for granted. Holding hands with the ones you love. Be grateful for what you have. Celebrate the seasons. Make everyday the best day ever. Humming and singing can be beautiful. It’s good to dream. Sometimes its best to just jump. Never be afraid to try something new. Laugh often. You are never too old to play outside. Say I love you – alot. Time together matters most. Hugs can cure almost anything. Always say thank you. It’s good to dream. Live fully.
We hope you enjoy browsing the pages of our website to learn a little bit more about our family.
I believe in children. I believe in whimsy. I believe in dreams. I believe in deep down good in people. I believe in childhood innocence. I believe that special needs children were put here for a purpose and I was chosen to be a part of that wonderful adventure. I believe in bedtime stories. I believe in God. I believe tickles can solve problems. I believe there are magical connections between people. I believe color can make you happy. I believe in a beautiful world. And I believe that like Harold and the Purple Crayon, you can make your life beautiful in all sorts of ways. Your choice.
