Emerson Holder, almost 1 year old, living with two rare illnesses

Emerson Holder, almost 1 year old, living with two rare illnesses
The unknown can be scary, but faith, happiness and hope have gotten Emerson and his family through the first year. (Source: Provided by family)

SALISBURY, N.C. (WBTV) - Hannah Holder knew something was wrong while pregnant.

“At 37 weeks, my suspicion came true,” she said from her home in Salisbury. “Extensive tests ended with scheduling an unanticipated C-section. My baby was born January 21 of last year.”

After birth, Emerson was quickly diagnosed with Tetralogy of Fallot and helsmoortel VanDeraa Syndrome. Two different illnesses, both a mouthful.

“The Tetralogy of Fallot diagnosis came first,” Hannah said. “It involves four heart defects: Ventricular septal defect, thickening of the right ventricular wall, misplaced aorta and pulmonary valve stenosis. Emerson has all four.”

That leaves this almost 1-year-old suffering from “Tet Spells,” where oxygen in his blood flow drops fast and he turns blue.

“He had a heart surgery last April to help with the spells,” Hannah said. “We’re hoping that remains a permanent fix.”

A month after that surgery, Emerson started having seizures.

Doctors then issued an MRI.

“The MRI showed what looked like little brain hemorrhages,” Hannah said. “For months we didn’t know what was going on until we eventually got into November and Emerson was diagnosed with helsmoortel VanDeraa Syndrome. It was good to hear a name to help explain what we’d been going through. The diagnosis actually answered every question we had.”

This syndrome is also known as ADNP.

Emerson is one of just over 200 cases in the world.

Side effects – Emerson has all of these – include brain abnormalities and lesions, problems regulating body temperature, heart defects, endocrine system defects and early tooth eruption.

“It’s… it’s a lot,” Hannah said.

Right now, there is no cure.

“Emerson’s brain is deteriorating,” she said. “Another MRI in the next couple months will tell us how fast that deterioration is happening. We honestly don’t know if he’ll reach 5-years-old, or 10-years-old, or outlive us. We just don’t know.”

The unknown can be scary, but faith, happiness and hope have gotten Emerson and his family through the first year. They say they absolutely can’t wait to celebrate.

“Here we come birthday,” said Hannah. “We made it one year.”

You’re almost there, Emerson. Welcome to #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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