WEST BEND — A West Bend mother wants you to know about the condition her son was diagnosed with.
He may look three or four-years-old, but Thomas just turned two.
He has Beckwith-Weidemann Syndrome. About 1 in every 13,700 newborns are diagnosed with this overgrowth disorder each year according to the U.S. National Library of Medicine. A recent study published in The American Journal of Human Genetics shows in vitro fertilization increases the prevalence to 1 in 4,000 births.
His mom Sarah is a bottle of nerves every other month, when her son goes for testing, "and find out if there are cancerous tumors growing. I get scared."
Thomas has never been diagnosed with cancer, but the chances are high with his condition. The chances of a rare kidney and liver cancers are possible. You can learn more by clicking here.
Thomas has classic signs of the syndrome. This includes folds in the back of his ears. He also has an enlarged tongue. This can affect sleeping, breathing and speech.
Sarah recalls strangers asking, "Why is it out? What's he doing with it? I would never say anything like that to someone that I don't know."
Her son now gets weekly therapy. She hopes by sharing her little boy's story, it will bring awareness to this rare syndrome.
"There are parents who are just learning that their children have it and they're maybe nine months old and two years old, and if you think about it they're missing out on all of these tests and scans," said Sarah.
Thomas' growth should slow down by the time he turns eight-years-old. To learn more, click here.
