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 name is Lauren Smith and I live in Schertz, Tx with my husband and four sons. My son, Paxton, has BWS and is an identical twin who was born in 2013. Paxton was diagnosed at three months old when I knew something just didn't feel right and had to push to get seen by a geneticist. After genetic testing, the BWS diagnosis was confirmed and I immediately found a new pediatrician.
Paxton has/had hemihypertrophy, enlarged tongue, ear pits and an umbilical hernia. He did have a tongue reduction at age 5 in Dallas, Tx with Dr. Fearon. Before the tongue reduction, Paxton had sleep apnea and had bi-annual sleep studies. The sleep study 6 months after the tongue reduction, showed that the sleep apnea had completely resolved. At age 7 he was diagnosed with severe to profound bilateral sensorineural hearing loss. There are no known reasons why this developed and genetic testing came back negative. He will get hearing tests every 6 months to monitor changes to determine if hearing aids would be an option in the future. For the leg length difference, he will have leg lengthening surgery between ages 12-15.
All that aside, he is no different than my other three sons, just more appointments. He keeps up with his peers academically and does sports with no issues due to his leg length difference. He is the sweetest child and very thoughtful of others.
Advocating for Paxton in the early months/years is my motivation for becoming involved in the BWS community. I joined the BWCFI in January 2019 and I enjoy helping and providing insight and guidance to newly diagnosed families. If it doesn't sit right in your gut or you have second thoughts, push for answers until you feel good with the outcome. I always welcome any emails or messages and will do my best to help as much as possible.
My name is Maegan Tipp and I live in Lake Jackson, Texas with my husband Nick and our three girls. Our middle daughter Kaysen was born at 33 weeks with an enlarged tongue, hemihypertrophy, and low blood sugar. While in the NICU, she was genetically tested and a few weeks later was diagnosed with BWS.
Kaysen had a tongue reduction at six months old, and also wore a shoe lift until she was seven years old. It was then she went in to have leg lengthening surgery to fix the discrepancy. Kaysen is now nine years old and is living life to the fullest! She is going on her seventh year of dance, and this year has decided she wants to play soccer. She is energetic, caring, and loves with her whole heart!
I wanted to be a part of the BWCFI to help other families. Without this foundation, I wouldn't have had the knowledge, guidance, and resources that I needed to advocate for my child. The BWS community has been such a great support system through our journey, and I am blessed to be a part of it.
My name is Alaina Brockway and I live in Commerce, Tx with my husband and three children, Jamie, Brooke, and Evan. Our youngest son, Evan, was born with an omphalocele, hypoglycemia, enlarged organs, hemihypertrophy, ear pits, nevus flammeus, and macrosomia. He was diagnosed with BWS at birth and confirmed through genetic testing 2 weeks later. He didn't have an overly enlarged tongue but ended up having a tongue reduction at 2 years old due to sleep apnea and swallowing difficulties (aspiration and penetration). He wears a shoe lift for his full, left side hemihypertrophy, but it hasn't slowed him down any. Evan is very active, loves to play sports, and has no trouble keeping up with his older siblings.
Through our BWS journey we have connected with so many wonderful families who have been instrumental in helping us through the hard times and cheering us on in the good times as well. The BWS community is so special because it is full of incredibly strong, caring, compassionate, and selfless people who are truly there to bear one another's burdens, and to offer support and encouragement through even the most difficult times. It is an honor and privilege to be a part of this incredible community.