5 Years with Beckwith-Wiedemann Syndrome
/I was looking back at old photos and videos and I just realized how far Jake has come through all of this. It amazes me that one little 5 year old has been through so much, and yet still has a huge smile on his face. I sometimes get caught up in the moment, especially during the busy seasons of our life, and forget all the little miracles that took place. So I wanted to create a video to show that there is another side to BWS. It is not all doctor appointments, cancer screenings, and tumor scares…there is so much more! And I hope this reaches at least one new parent that just found out their child has BWS. I remember the first time we heard our son had a chromosome disorder, they didn't even know what type at the time, and it felt like our world had shattered. I had no idea how I was supposed to feel, and I wanted to find comfort in knowing there was a future for my baby. And I am here to tell you, that yes it will be difficult. Yes, there will be a lot of doctor appointments, and surgeries, and tumor scares, and the list may go on, BUT you have this amazing baby that God has chosen to be yours. He was made perfect in God's eyes and you will find that your child with BWS was made for more. They have a fighting spirit, a bravery found deep in their soul, and a love that could change the world. Take one day at a time, and know this hardship will only last a season. And it is all worth it!
Psalm 139
We hope this brings a little smile and small glimpse of hope to what you are facing in life right now. We also want to welcome our newer families to the “BWS family”. With the help of some amazing BWS moms (Honey-Marie Tapia) who made water-proof bibs and to-go carry bags. Alisha Davlin was able to get special needs spoons donated to help with feeding. And we will also be providing a BWS bracelet. There are 12 BWS Family bags. There is no cost. First come first serve and a variety of boy and girl colors. We just want to be able to bless another family out there who needs a hug and to know we are all here for you. If you would like a free BWS Family bag, please email: mybwsbaby@gmail.com with your address and preference for a girl or boy design.
And remember: BWS is more than a syndrome….it’s just eating ALL.THE.TIME :)
Blessings from our family to yours
