Molly's Kids: Lack of legislative response for grieving mother - | WBTV Charlotte

Molly's Kids: Lack of legislative response for grieving mother

(Photo courtesy family) (Photo courtesy family)
KANNAPOLIS, NC (WBTV) -

Did you read Monday morning’s post on Sophie Sain? You should. I just found out her mom only wrote me after trying to get attention from 273 North Carolina Representatives and receiving a whopping nine responses back.

Sad and preposterous. All of it. 

It's sad and preposterous to say seven dollars could've saved Sophie's life. It's sad and preposterous to say only nine elected officials responded to a grieving mother who wrote them begging for help.

If you didn't read Sophie's story here, she died at 10 months old because the test for Krabbe Disease isn't required as part of North Carolina's newborn screenings. 

If a baby starts to show symptoms of Krabbe -- a rare genetic disorder -- research says it's too late. They will die. If a newborn is tested and it's found, they have a chance to be treated and survive. 

When Sophie was in her last month and Michele Sain was watching her daughter suffer, she wrote all 273 legislators in the North Carolina General Assembly. She begged them to implement a bill to make this screening a law. 

She explained the cost was $7. 

She explained it was a law in New York, just not in North Carolina.

I have a copy of the email. It's a good note. Not excessively long and has a picture of Michele and Sophie (similar to what you see here). 

She sent it in January of 2016.

Again, nine elected officials replied.

Here's part of what she wrote in that email:

"My daughter is almost 9 months old now. She is blind, she is unable to move on her own, she has violent seizures and still can not bear to be touched or bathed because of severe pain. She's on 24-hour oxygen, tube feedings and a patient of Hospice. ...We have made funeral arrangements instead of planning her first birthday party.

"...This could all be different, her story could have been changed by the state of NC, if the Krabbe Leukodystrophy was added to the newborn screening. 

"I beg you to please, please present this as a bill and add it to the NC newborn screening to save the lives of other precious babies."

Soon after sending that email, Sophie died. 

Michele is now trying to breathe again. She got involved with a group calling Hunter's Hope Foundation out of New York. They successfully got NY to require the test that would indicate if an infant has Krabbe Disease. 

Michele is hoping North Carolina is next.

She says that's why she reached out. Can #MollysKids get attention to what should be common sense?

I'll make it really easy to any elected official reading this -- if you are interested in helping Michele and putting in a basic requirement to help babies like Sophie, email me. Please. MGrantham@wbtv.com. I'll hook you up with Michele. I'll let you guys take it from there. She has the research and the contacts from New York that already have this screening in place.

We can't save Sophie, but we can save others.

Send me a simple note. 

As Michele says, her daughter was worth $7.

#MollysKids

**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.**

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