Local 2-year-old running out of time with rare disease

WILLIAMSVILLE, N.Y. (WIVB) — A local 2-year-old girl is dealing with a rare disease. Doctors told the family there’s not enough research and they’re still trying to find the best treatment for her.

The family says her health is getting worse the longer they wait for treatment.

You wouldn’t even know Tessa was dealing with a rare disease if you met her. She runs and around and plays like most girls.

“She’s happy, she would never know, she’s been through hell and back and she bounces right back,” said Laura Termini, Tessa’s mother.

At only eight months old Tessa was diagnosed with severe Neutropenia, a rare blood disorder with low levels of white blood cells which caused her to have seizures.

“I was holding her and her eyes rolled back and she was shaking, we were in the emergency room and they took her, and I was hysterical,” said Termini.

Tessa is also in a lot of pain, but she can’t tell her mom exactly what hurts so she shows her in other ways. “She would scream that her legs were hurting or she would be holding her head and screaming that her head hurt,” said Termini.

Doctor’s told Termini her disease is genetic and her daughter got it from both of her parents.

Doctor’s also told the family there’s a good chance her disease could turn into cancer and a bone marrow transplant is the only cure.

The National Institute of Health doesn’t see kids until they’re 4 years-old, but Termini found a doctor through the institute that agreed to look at Tessa’s case.

The doctor is figuring out if a bone marrow transplant is the best treatment for Tessa, but in the meantime, Termini says time is running out.

“I see her deteriorating. She will get worse or she’ll die of an infection,” said Termini.

The family has also reached out to St. Jude’s for help.

If you would like to help the family with medical bills, you can donate to their local GoFundMe page.

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