My heart aches when I get contacted by a listener who needs help. A first time mom from Norway just found out her 2-month old baby has a rare disease. So rare, she's the only baby in Maine with it.

 

Krystye Bettney was thrilled to finally become a mom two months ago, October 4th. But a month later her baby stopped eating.

After tests and a week at the Barbara Bush Children's Hospital, the bad news came back...little McKenzie had a extremely rare and fatal genetic disorder called Pompe Disease.

Krystye Bettney
Krystye Bettney
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The disease attacks the body causing muscle weakness, poor muscle tone and enlarged organs, which includes the heart. There is no cure for Pompe but there is treatment which unfortunately just prolongs life. The treatment is for her lifetime and is enzyme replacement therapy which she will need every two weeks.

Just last week she received her second treatment at Maine Medical Center.

Krystye Bettney
Krystye Bettney
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Mom says she is a fighter and so strong and she couldn't be more proud. McKenzie will have a life time of disabilities because of the disease.

As you can imagine, Krystye is no longer able to work because McKenzie needs 24 hour care. Her father has taken so much time off work himself and bills are piling up and Christmas is right around the corner.

This is a struggling family. WCSH6 did a story about them last week that was very moving.

I know, I know that everyone is struggling this time of year - or all year! If you can forward this story to someone you think might be able to help...well, that in turn is a big help!

Thanks.

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