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Rare Diseases - @largerthanbws

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“Our son Owen was born on February 7, 2018 weighing in at nearly 12 pounds and almost 2 feet long. When he was two weeks old he was officially diagnosed with an extremely rare genetic syndrome called Beckwith-Wiedemann Syndrome (BWS). BWS gives children a higher risk of developing childhood cancers. Owen’s risk is 1 in 5 children, or about 25%. It is so rare that most doctors haven’t heard of it and most pediatricians need to google it before taking care of these children. BWS affects every child that is diagnosed with it differently. Not one child is the same, which makes diagnosis and early recognition extremely tricky. Combine that with the fact that little is known about it and you have children who are getting diagnosed very late or not at all. This is concerning because  BWS babies rate of growth is so extreme that if they do get cancer it grows much quicker in them than it would in a non BWS child. For this reason, BWS babies are given ultrasounds and blood draws every three months until the age of 8. Owen was born with an extremely large tongue that never fit in his mouth which he had reduction surgery on at 7 weeks old because it was obstructing his airway. He was also born with a very large belly, hemihypertropy (enlargement or uneven growth of one side of the body), hypoglycemia, and an umbilical hernia.  Owen also sees countless specialists and therapists. Even though BWS babies go through so much they are resilient and are always smiling. Owen is our pride and joy and we wouldn’t change him for the world. Our family has spent the last two months raising awareness for Owen and all the BWS babies out there by starting Larger Than BWS. Larger Than BWS aims to connect BWS families and educate those who have never heard of it. We are hoping that the more awareness that is raised the more children will be diagnosed which ultimately could save them from cancer. Our family is proud to wear these awareness necklaces, yellow for pediatric cancer awareness and is one of the BWS colors, and stripes for rare disease awareness. Together we hope to make BWS known instead of a question!” @largerthanbws 

Rare Disease

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