NC toddler with brain tumor denied lifesaving treatment due to insurance ‘red tape’

North Carolina news

RANDOLPH COUNTY, N.C. (WGHP) — The Gilmer family is hoping and praying for the call that will change their 2-year-old daughter Henleigh’s life.

In March 2020, Henleigh was diagnosed with an aggressive brain tumor called Medulloblastoma on the top of her cerebellum.

To get rid of the tumor and save her life, she must go through a special treatment called Proton radiation.

According to Johns Hopkins Medicine, the radiation would destroy tumor cells that can target the source more precisely than X-ray radiation.

Heather Gilmer said the treatment can cost around $7,000 a session, and Henleigh needs 30 sessions in a 6 week period.

Unfortunately, no hospital in North Carolina offers the treatment, and several hospitals that do offer it have denied Henleigh because of her NC Medicaid insurance.

Henleigh was adopted by the Gilmers as a foster child and is automatically enrolled in the state’s Medicaid insurance program until she is 18. Her mother is the sole earner for the family because her husband is disabled, and the cost of insurance premiums has piled up.

Heather said “red tape” has blocked Henleigh from getting the life-saving radiation she needs, and the family has been nearly losing hope.

“As a desperate mother, this is our only hope. She’s getting ready to be 3 on Saturday, she deserves to grow up,” said Gilmer.

Professionals like Anthony Werner of Patient Advocate International Incorporated have agreed to help Henleigh get what she needs. 

Community members have also joined together to help the Gilmer family raise money for Henleigh with a GoFundMe account.

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