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Family battles through son’s uncommon disease

Posted at 12:17 PM, Feb 28, 2019
and last updated 2019-02-28 14:17:22-05

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    Kansas City, MO (KCTV ) — Thirty million Americans have a rare disease in the United States.

Thursday marks the national day to recognize rare disease and bring awareness to the struggles families face.

Jennifer Bertrand is a local Kansas City mom that many know as the winner of HGTV’s ‘Design Star.’

Her 9-year-old son Winston was born with two rare malformations — lymphatic and venous malformation, which is a uncommon blood vessel disease.

Recently, Bertrand and her husband found out that the doctor they take their son to is no longer accepting their insurance because he is moving to the private sector beginning March 1st.

Winston has a surgery scheduled in New York City on March 1st – the same day their insurance coverage will now end.

If it wasn’t for a Go Fund Me page set up by a friend of Bertrands, Winston wouldn’t have been able to have his surgery tomorrow.

Though, many other families aren’t this lucky.

This is the type of news that many with rare conditions face.

There are about 7,000 rare diseases many of which do not have any FDA approved treatments.

Researchers and families hope this reality will change with more awareness and funding.

For Bertrand, she said the other big struggle they face is teaching her 9-year-old that “rare” is beautiful because as he grows, he just wants to fit in.

A disease is considered rare in the U.S. if it affects fewer than 200,000 people.

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