Who we are: BWCFI
The Beckwith-Wiedemann Children's Foundation Int'l (BWCFI) was created as a resource to help families globally. We are a non-profit 501(c)(3) foundation dedicated to helping families find local BWS resources, physicians and hospitals as well as providing current BWS information. In addition, we also offer our BWS DVD (free including worldwide postage) which features medical experts and other professionals familiar with BWS.
As one of the founding directors of the Beckwith-Wiedemann Children's Foundation International in 2014, I was motivated to give assistance and help to other BWS families as I had been helped by the original BWCF when my twin granddaughters were born in 2002. One of the twins was diagnosed with BWS at birth which catapulted me into the BWS world.
Now, those twins are 17 years old and making plans for college soon. My plan is to continue to be involved until my granddaughters graduate from high school in 2020. Then I will turn over the managing of the BWCFI to others with the same passion and commitment to the Beckwith- Wiedemann families and professionals that drives me each and every day to make a difference - one child, one family at a time.
My name is Kristen Burr and I am the only Director of the BWCFI that doesn't have a direct association with a BWS child. However, I do consider that I have 800+ children to call mine.
My journey with BWS started in 2003 with Dr. Jeffrey Marsh who ultimately performed more than 600 tongue reductions in his career. Upon his retirement in 2014 I transferred to Dr. Chad Perlyn to continue the legacy.
What many don't realize is that I have a child with a syndrome which makes me no stranger to the emotional rollercoaster BWS families go through. I have the same struggles with physicians, the same worries and frustrations and the same resume of specialists. My Olivia drives me to serve people at a higher level and to look at life through a different lens.
My own experiences have also taught me to support families and meet them right where they are in their journey and try to make it easier. While I come to the table with a lot of personal knowledge that comes from raising a "special" child and working with medical professionals, I am also striving to make a difference with changing knowledge and education in the Beckwith-Wiedemann community. My passion is to continue helping others while also making a lasting impact on the BWS world.
My son Paxton was born in 2013 at 30 weeks, he is an identical twin and only he has BWS. He was diagnosed at 3 months old by a geneticist and is currently managed by a Hematologist/Oncologist for his screenings. He has hemihypertrophy, enlarged tongue, umbilical hernia and ear pits. Paxton had a tongue reduction at age 5 in Dallas, Texas and is currently managed annually by orthopedics for his leg length difference.
My son is my motivation for getting involved in the BWS community and I joined as a Director of the BWCFI in February 2019. I look forward to giving back and helping families just as I was helped when my son was newly diagnosed. It truly does get better and easier as they get older.
My name is Bernie Haberman and my family is originally from Houston, Texas, but we now live in Senoia, Georgia.
Our family has had quite the journey when it comes to medical diagnoses for our kiddos. Our oldest child was diagnosed with Juvenile Idiopathic Arthritis when she was a toddler (now in remission). Our third child was born in 2008 and was diagnosed with Hypoplastic Left Heart Syndrome shortly after birth. Unfortunately, we lost our Luke at 5 1/2 weeks old. Shortly after the loss of Luke, I became pregnant with our son James.
At about 18 weeks pregnant, an ultrasound revealed a moderate-sized omphalocele. Even with the omphalocele, BWS was never mentioned as a possibility, only the possibility of James having Trisomy 13 or 18. James was delivered early due to my high blood pressure and low amniotic fluid. Once he was born, I noticed the creases in his ears. After a few days, we noticed that his tongue was "different". It was large, but we couldn't be sure of the size due to a severe tongue tie. Once we voiced our concerns to the geneticist, she agreed that he should be tested for BWS. Once the methylation study came back as positive for BWS, my husband and I began to research more about the syndrome.
Aside from a tongue reduction, James has had a few minor surgeries and wears hearing aids for mild low frequency hearing loss. James is 11 years old now and we are entering the adolescent phase of life. Being a part of the BWS Community helps me to understand what may be coming in his future and also enables me to help others as they are on their own journey. Being a part of the BWCFI allows me to offer any advice, experience, or resources to help families when they are facing new challenges and journeys.
My name is Sarah Bradshay and I joined the BWCFI in March 2020. We currently live in Portland, Oregon but I am originally from a small town in northern Idaho. The movie Dante's Peak was filmed in my hometown, although the giant volcano was either really well hidden or just computer-generated.
I have five kids - a long-suffering daughter named Ainslee who's 11 and two sets of twins. My older twins are seven year old identical boys named Jonathan and Jaxon. Our youngest twins are a girl named Addison and a boy named Avery, who are 2. My pregnancy was completely normal until my water broke unexpectedly at 32 weeks. When we arrived at the hospital, we were warned that the babies were under five pounds and would not be coming home with us after delivery. It was a difficult labor on both the babies and me.
We received our BWS diagnosis shortly after Addie's first birthday. Every doctor who examined her tongue initially dismissed BWS as a possibility because she was so small, but the markers were there. She has a nevus flammeus (faded quite a bit now), an umbilical hernia, hypoglycemia and of course that big ol' tongue. Her hemi didn't show up til close to her birthday as well, which is what ultimately helped me convince the geneticist to test for BWS. We flew to CHOP last summer and met with Drs Kalish and Dr. Taylor and will be having a tongue reduction with Dr. Perlyn in July 2020. Addie mostly looks like a typical toddler now - anyone who hears what she's endured says, "But she looks so good!"
I wanted to be a part of BWCFI because Addison's journey has changed me in ways I never anticipated. When we were told she likely wouldn't live, I left my career to care for her full-time. Our family came perilously close to losing everything and all seven of us recognize the gift we have been given. The encouragement, moral support and reassurance we received from other BWS families truly carried us through that time. I want nothing more than to be a part of that journey for another family. Being a part of the BWCFI allows me to share our story, to learn and to support other families on their own journeys. I am always willing to answer questions or offer support!