Welcome to our Youtube Channel! Every week we interview a BWS family live on our Facebook page to learn from them and help them share their experience with BWS. We call these interviews Because We’re Strong Segments. Every family and their experience is different. This is why sharing is so important! We encourage you to watch and learn, and if you are a BWS family who wants to share your story scroll to the very bottom of this page and click the link to fill out our form !
Our Families Mission
Learn about our Mission and why Larger Than BWS was started Because We’re Strong Segments
Meet Angelia from New Hampshire, USA- She kicked off our very first Because We’re Strong Weekly Segment & told her BWS story about her beautiful daughter
Meet Breanne from Canada. She is featured in Because We’re Strong Episode 2 & shares her story about her 2 year old son who was born at just 25 weeks.
Meet Tania from New Zealand. She shares her story about her journey with BWS so far with her son. He was a premie and is still awaiting genetics confirmation and clinical diagnoses.
Meet Britt from California USA. She shares her story of her 3 1/2 year old daughter and what their journey with BWS has been like.
Meet Selina from Ireland. She shares her story of her 4 year old daughter Maya and what their BWS journey has been like so far!
Episode 6 was a special episode because it was our first ever segment done on Instagram! We met with Selina Scott from Ireland who spoke to us about her Son Ollie who is 1 1/2. We spoke about his diagnoses as well as CPAP as an option for his enlarged tongue
Episode 7 was one of our first ever segment events with an adult with Beckwith-Wiedemann Syndrome, Christopher. Growing up, there was practically no resources and he went through countless surgeries. Over 20 actually. Hear him share his story of what growing up with BWS was like for him!
Meet Chrissy from Wisconsin, She is the mother of BWS twin teenage girls. 16 years ago her journey with BWS began. Her one twin has signs and symptoms of BWS while her other has none, yet they are both diagnosed with BWS. Watch as she shares their journey and why she feels awareness is so important!
Meet Felicia from Colorado USA. She shares her story of her son Sam who does not have many of the classic Beckwith signs. The only one he shows is hemihypertrophy in his leg. Listen to her story as she pushed the issue of his one larger leg which lead to his diagnosis.
Meet Kelley from Texas USA. She talks about her little girl with BWS and how their family approaches her diagnosis and her routine screenings by turning to their faith. She talks about how her family has learned to embrace their daughter and cherish every moment.
Larger Than BWS spoke with Sheila from New Jersey, USA. She talks about her little girl Gracie and the struggles and triumphs they have experienced so far. Her daughter will soon be having a Tongue Reduction Surgery at The Children’s Hospital of Philadelphia to improve breathing for Gracie.
Larger Than BWS speaks with Mary and hears her powerful story. Mary lives in Canada and grew up never knowing why she was so different than other children. It wasn’t until Mary entered her symptoms into google when she was in her 50’s that she learned she may have BWS. It was then that she was genetically tested and confirmed to have BWS. Listen and watch her inspiring story about her journey.
Larger Than BWS spoke with Crystal from Canada. She shared her families amazing story of how well Lennon is doing and how life for them has been so far.
Lacey is a young adult who was diagnosed with Down Syndrome and BWS when she was a baby. Doctors told her mother that she would not live to see age one. She wants everyone to know that her lives and the lives of others are not expiration dates and that we all add value to the world.
Mckenzie and I met when she was in town a year ago for a tongue reduction for her daughter. We became friends from the start and bonded over our children and their syndrome. During her segment she on tells all about her daughters journey including her breathing issues and her tongue reduction.
On this segment of Because We’re Strong you will hear Deanna’s story about her families journey with BWS. She talks about her sons diagnosis and also mentions how she had had prenatal genetic testing, and how BWS is not something they test for in those tests.
During this segment we speak with Leonela. She details her families difficult 6 months they have had with her son. She talks about his diagnosis, some ultrasound scares, as well as the huge blessing her son is to her family.
Chantal comes on and shares her story of having 2 boys with BWS and how rare their case is. You do not want to miss their incredibly amazing story!
Abbie comes on and shares how she dealt with BWS and how she handled it as a young mother. She shares her daughters story in hopes that she can help raise awareness and educate others.
In this Episode we speak with Kim. Her daughter only had one physical sign of BWS, a mildly enlarged tongue. Kim pushed for 11 months to get her daughter tested! It turns out her motherly instinct was correct and her daughter was diagnosed with BWS 11 months after Kim started fighting for answers.
In this episode we speak with Gloria. She shares her daughters story with BWS and how it was crucial that her daughters care was intercepted by the Children’s Hospital of Philadelphia. Her daughter has battled cancer twice and is only a few years old.
This week Larger Than BWS spoke with Meredith. She knew when dating her husband that her husband had BWS and now so do both of their boys. Hear her incredible story about her family and how they approach BWS from a place of fun and humor
In this episode we talk with Marina from New Jersey. She adopted her son Ryan who has BWS. She talks about all of his medical complications and struggles as well as how amazing her boy is!
In this episode we sat down with Crystal and not only talked about how she discovered her daughter had BWS, but also her as well! She went undiagnosed with BWS for over 30 years until her daughter was born and tested. When her daughter was confirmed so was Crystal. Hear her amazing story and how she walks with her faith to help get her through the hard times. She also has partnered with Alex’s Lemonade Stand to help raise funds for BWS research!
WANT TO SHARE YOUR STORY?
Larger Than BWS has connected hundred’s of families through simply sharing stories. If you are interested in sharing yours please click the link below to fill out our form for our weekly live Because We’re Strong Facebook segments!