Our world forever changed when our son Jacob was born. He came 3 weeks early and everything seemed to be fine until a few hours after his birth when the doctors came into our hospital room and began discussing signs that our son had a chromosome disorder. It was the most difficult situation I have ever had to face.
We felt scared, alone, and helpless. I spent countless hours trying to find resources, support, and learn all I can about his diagnosis with Beckwith-Wiedemann Syndrome.
It is my intent to create a website where parents of children with BWS can find all the information they are looking for because the last thing you need as a sleep-deprived parent with a newborn is to be spending countless hours on google!
I pray that you may find comfort in knowing you are not alone in your journey with BWS, and that you are able to discover that life is beautiful beyond the diagnosis.
Our amazing and talented friend Ms. Lianna wrote this beautiful song for Beckwith-Wiedemann Syndrome. The song sums up everything I've ever wanted to say to Jake from reminding him how proud we are of our little butterfly, to not letting others bring him down. The BWS symbol is a butterfly to symbolize that this is a childhood disease. Most children don't feel the affects of having Beckwith-Wiedemann Syndrome once they reach adulthood. The hormone that causes the overgrowth slows down, the tumors stop growing, and the enlarged organs begin to fit into place.
Please help bring awareness for Beckwith-Wiedemann Syndrome by sharing this song. We hope to make this rare syndrome known so doctors and medical professionals can properly treat our children. All proceeds will go to support Dr. Kalish and her efforts in BWS research, plus you will help us in thanking our dear friend for writing a beautiful song that we will cherish forever. Click on the picture below to purchase the song on iTunes.
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What is Beckwith-Wiedemann Syndrome?
Find information and resources on BWS.
Help support BWS by wearing yellow on April 6.
Click the link below to find information on support groups, advice from parents, and other information on Beckwith-Wiedemann Syndrome.
Visit Jacob's blog and read about his journey with Beckwith-Wiedemann Syndrome.
Show support by sharing his webpage with friends and family to help raise awareness.
Journey with Beckwith-Wiedemann Syndrome
All donations will go to support Jacob's medical costs